Sarcoidosis - not enough care and attention given to sufferers

Morning everyone.

Haven't been posting much lately as either there hasn't been much to say or I haven't the time/energy to put anything in writing.

I've had a brief flirtation with the medics panicking that I might have lymphoma rather than sarcoidosis, based on results from a CT scan. The haematologists were called in and arranged a lymph node biopsy, but I got lucky because they were able to do it as a needle biopsy using ultrasound to visualise the nodes. However they decided its definitely sarcoidosis and now I'm on steroids. Having had 20 mg/day for about 4 months we're now on gradually reducing doses with blood tests in between to check how things are going. Oh and pretty spectacular bruises each time they take more blood.

Good to get an update from you all and hear how things are going.

Morag

Oh Helen you poor thing! That is devastating to lose so many family members like that. May I ask whether it was through illness or injury? Either way my heart goes out to you. It is just this sort of trauma that can cause your Sarcoidosis to really flare up so please look after yourself and get yourself back to the doctor if you start experiencing more symptoms. It's better to treat things early than to try to ignore it. My advice would be to try the nasal steroid. Steroid drops, inhalers and ointments don't carry the same risks as tablets and injections because the strengths are much lower and they are targeting specific areas. When you take tablets or get injections it all circulates the body so side effects etc are a greater risk. The nasal steroid will act like an anti inflammatory and will reduce the swelling and pain. It's understandable that you've been crying a lot but unfortunately it will also have caused your nasal membranes to swell. I know the treatment sometimes feels worse than the disease. I was having an awful time with the side effects of the steroids and the doctor wanted me to start on steroid inhalers. I didn't want to try it but I gritted my teeth and gave it a go because he told me that it was only a tiny amount of steroids compared to the tablets. I have to say I'm glad I did try it because it certainly helped and I became less breathless. I think its the not knowing the outcome that probably scares most of us and when we are already feeling awful the last thing we want is more medication! You are very kind to say that I'm brave but honestly it is through starting this forum and chatting to all the members that keeps me strong and feeling supported. We all know what each other is going through whether we have lots of symptoms or a few, it doesn't matter. All the symptoms are horrible and scary. We have all had to go through a battery of tests and I think almost all of us has been told at some point that our symptoms are pointing to something terrible like lymphoma, cancer, TB, etc. Then we kind of breathe a sigh of relief when we are told it's not any of those diseases but the emotional roller coaster has already taken its toll. We then face the various doctor's opinions and knowledge or lack of knowledge regarding the disease. It's little wonder we all feel emotional wrecks at times. When I started this forum I was angry, stressed, upset, confused and felt that no one believed me or cared. Then one by one people like yourself joined in and I no longer felt alone and I finally had people to talk to who understood exactly how I felt. So really what I'm trying to say is that me being 'brave' has come from everyone on this forum and if I can give back just half of what you guys gave me then I know I was right to start the forum in the first place. My only regret is that we all don't live in the same place so we could have all met up on a regular basis and made an even better support team. I know what it is like to lose loved ones close together. I lost my husband and mother-in-law with in 8 weeks of each other. It's a dreadful pain that you think will never go away, but it does eventually dim into the background. You just need time. I hope you have someone to give you the support you need right now. Even if you do we are all here for you Helen. I'm sure in the next few days the other members will realise that the forum is running again and will have words of support for you. Whether you are feeling angry or sad please feel free to get it off your chest here. It really will help. Keep your chin up. Go and get the nasal steroid and remember we are all here for you. kindest thoughts, June

Poor Morag, you have been through the emotional mixer too lately, haven't you? I'm surprised you didn't cuff them all round the ear for putting you through it like that. I sometimes wish the medics would just say, "We don't know what it is, but we are going to do a battery of tests to rule out things and hopefully find out what is causing your symptoms." There is enough information in that sentence to be going on with and not to scare people. Because tests take so long sometimes to get a result, it is not beneficial to patients to have them worrying for days that they may have something that could kill them. I remember how I felt when my GP phoned to tell me I had to go to the clinic to speak to him about my chest X-Ray results. I knew it must be bad news as he had never phoned me before but when I got there he hummed and hawed his way through 30 minutes trying to say he thought it was end stage cancer of both lungs. That upset me more than anything. I firmly believe if they don't have a definite answer then they should keep quiet until they do. You must have been on edge for ages when they said they thought it was lymphoma. Shame on the person taking your bloods too. Bruising shows shoddy workmanship and they need to go back and learn how to take bloods again. There is no excuse for bruising a patient. I hope they are using a butterfly needle because on e of the reasons for bruising is too large a needle being used. Invariably the large bore needle goes right through the vein. It's far easier to find a vein with a butterfly needle too. The other reason is not keeping sufficient pressure on the wound after the needle is withdrawn. When you are on steroids it takes longer for the blood to clot so keep pressure on the wound for longer than normal or the blood will go into the surrounding tissue. Sorry, I will get off my soapbox now! It's a pet hate of mine to see bruising after blood taking. We were always taught it should never happen if you use the right equipment and every time it does go wrong you leave scar tissue too so the vein might not be of use to take blood from in the future. Any how enough of my ranting, how are you feeling on the good ship steroid? No side effects I hope. How is your Sarcoidosis? I hope it is responding to the steroids. I'm finding that extremes of weather make it worse i.e. the cold is making me cough and cough and in the hot summer coughing and sweating +++. I was constantly soaking wet with sweat (UGH! whether day or night. Now I'm only getting it when I exert myself when I'm cleaning etc. Fatigue is the one thing that really gets me down and reading between the lines of your post I'm guessing you have been fighting fatigue too. I can literally fall asleep without warning. I've never experienced anything like it. You just have to sleep and nothing will prevent it. I can get up at 9.00am and need to sleep at 11.00am. The trouble is I don't wake up for hours so nothing gets done! I can easily sleep 4 - 5 hours in the day and still be exhausted at bed time. Given that I am also in a wheelchair, I left baffled as to why I should be tired. I'm not exactly 'running around' like everyone else. I know sick joke. I've been annoying the receptionists when they tell me to 'take a seat' and I say. 'Thanks but I have my own. My seat is attached to me!' They don't think it's funny. I'm hoping all the forum members feel well for Christmas or at least well enough to enjoy it however they celebrate it. I feel awful for not being on the forum for so long. I hope I haven't let anyone down and hope to see more postings soon. Really happy that you posted, Morag and really hope that you are over the horrible tests you had to have. Kindest regards, June

HI Tim & welcome

I was so pleased to see all these emails coming flooding in, I was getting worried this site had collapsed which would of been a great shame.

HELLO JUNE>>>>>>SOOOOO PLEASE TO SEE YOU BACK

I will get on and read the posts now.

Best wishes to all

Linda

Tim,

Don't give up on seeing people just attend to go to all your appointments as it is all too easy for them to forget about us, also it is better that they can monitor you rather than wait for it to flare up again.

It may all seem this was your experience a while ago, but you still need to be kept any eye on

Take care

Linda

Hi June,

You have been deeply missed.

SO sorry to hear the way you have been treated, and it took them a mionth to disciver they couldnt help you,,,grrr!

I was abit suprised that your doctor was shocked as after all you havent had the greatest of treatment or understanding from your GP either along the way really have you!

Glad to hear you have bounced back again and giving a great contribution to this site as usual.

(((BIG HUGS)))

Linda x

Helen

So sorry to hear that you have been having some nasty occurances latley.

Hope it will soo all improve for you.

Kind regards

Linda

Hi Morag,

Glad to hear they finally realised your problem albeit putting you through a scary time initially.

Take care

Linda

A very quick update on me.

I last went to see the Sarcoid specialist in August, had lung function tests etc.

Got a reprieve until January, so I have been very lucky to have quite a clear patch.

Saw the rheumatologist last month who said she felt it was starting to have a little flare up...

I have had a few blips of late, but hey ho. I am up to my 52nd blood test!!

Back to the eye hospital In January, then rheumatologist, chest xray, lung funstion test so in the new year it will all begin again.

I also have to have another CT scan as there is a node they want to keep an eye on.

But I must say that I am being treated very well and nothing is too much trouble for any of my consultants, so I truly feel for all of you who are not being treated in the way you deserve.

xxx

Hi Linda, I'm soooo glad you posted. I was worried you might not be logging in any more. You were doing a sterling job of keeping the troups supported and informed. Thank you so much. You and everyone who was able to give support are stars. I felt so guilty at not posting for so long but just didn't feel like it for a while. I think the way my specialist is helping me has made a huge difference and he's slowly increasing the steroids over a long period so I don't have any more horrendous side effects. I am so delighted to hear that you have been feeling better. I had a little laugh at your counting the blood tests. It's frightening isn't it just how many blood tests, X-Rays CT scans etc etc we all have. I'm positive I can stand in the corner of the room over Christmas and take the place of a fully lit Christmas tree ha ha! You know when I came back from my last CT scan, my two cats wouldn't come near me. It dawned on me that they must have picked up the scent of the radioactive injection because the radiographer had said I must drink loads of water over 24 hours to flush my system. Talking of CT scans. Where is the node they have found? Have they given any indication if they think it is a granuloma from the sarcoid and therefore benign or are they thinking you might have another problem. You've done so well I don't want to see things going horrible for you again. I'm really glad they are treating you so well and really hope they continue to do so. Your post made me feel that you were quite chipper which is fantastic. It actually took the hospice 9 weeks to decide I wasn't the type of person for them! It was unfortunate that on that particular day my daughter couldn't come with me otherwise they would all have needed a doctor I think. I just don't know what they meant but I'm hoping to get an appointment with my GP tomorrow and I will ask him if they wrote a letter (which they should have done) and what they said. The reason the GP was shocked at my being chucked out of the hospice is because he is a locum doctor but you are right had it been the regular GPs then the response would have been different of the 'so what? We don't care' variety. The locum doctor has been a star as regards treating me. He sent me here, there and everywhere for tests etc. and I can't fault his attention to detail. I've also been back to the neurologist since we last spoke and she said that the nerve problems must be central and not just peripheral peripheral as she first thought so nothing can be done except to hope that if or when I go into remission the nerves will return to normal. I turned down the operation for the carpal tunnel on both hands as (a). I'm too damned scared that they will leave me permanently damaged (given my track record in these hospitals) and (b) They hadn't thought about how I was going to manage doing anything for myself and more importantly transferring from my wheelchair to toilet, bed etc. etc. Anyway having forked out a fortune for splints I finally got a free pair from the NHS with a promise of a second pair to come. How lucky am I? Ha Ha! It must be Christmas!! I was trying to think which of the symptoms was the worst for me and I've decided it's the dreadful sweating bouts. I can handle the pain, I can handle looking like a melting Jabba the Hut. I can even handle dropping things repeatedly and even the heavy nose bleeds. But the sweats....OMG! I've never had anything like the sweats in my life. To go from a normal (dry) person to a dripping wet heap in the blink of an eye is beyond my handling capabilities. It honestly looks like I've stood under the shower with my clothes on. I wish there was something to curb them. It wouldn't be so bad maybe if they only came at night. Does anyone else get them bad like this? If so what do you guys do? Don't tell me to buy wellies ha ha!

So, what gets everyone else's vote as the worst symptom they suffer? Who knows? Perhaps if you all post what you think is your worst symptom, we can all help each other to make our 'pet hated symptom' easier to live with. Now wouldn't that be a great Christmas present?

I hope all the other people who joined us will come back to the forum. Even if they are in remission their contribution to this forum is more than welcome. Right Linda I've rabbited on for ages again ha ha! so I'll say goodnight for now. Lots of hugs, June

Hi all, missed you all but I was hoping that as it has been quiet that everyone was getting better .. and hello and welcome Tim Sad to hear that some of you have had issues, but hope that you are all getting much better soon overall..

I am quite the same as you Linda, we seem to have some similar symptoms. Mu lung specialist saw me mid September and was happy with my progress saying that lungs are back to almost normal, over 90% capacity. So I have not really had any lung issues recently, not needed my inhaler more than three times in last 2 months. Cannot describe that never ending fatigue.. regardless how much or little I sleep.. Joints however have started playing up again... Really stiff and fingers are sorest ever. Thankfully feet have been OK. I have got some new meds as well, not steroids, but they were supposed to take about 3 months before i'd notice the difference. My stomach cannot handle all these drugs tho and I have most awful heartburn.. I have been taking Omeprazol to protect my stomach, it helps some but not completely. I will see both of my consultants in April again.. hopefully there are no other nasty symptoms to add Hang in there all, and hope it will look up for all of us very soon x

Take care and thinking of you all, you have being great support to me and other members x

Love MM

So glad to see you back MM but so sorry to hear your problems with fatigue, heartburn etc. I'm on omeprazole too and you're dead right it only half works. I have to admit that when the heartburn has been really bad I've grabbed some gaviscone in desperation. It's wrong I know but what do you do when it gets too sore to put up with. As for the fatigue I have to give in and lie down for a sleep or I end up falling out of my wheelchair because I've dosed off without clicking my seat belt. I think the change to cold weather is also causing a lot of us to have some symptoms exacerbate. I am so very pleased to hear that your lung capacity has improved so well. That's fantastic and I have everything crossed to hope it stays that way for you. Lets see 2014 putting us all into remission. Which meds did they give you for your joints? They gave me Hydroxichloroquine. It took a few months but it is working wonders. It even alleviated the carpal tunnel that was really acute. If this is the same drug as they have given you, it also causes heartburn so be sure to eat before taking it. Also I pushed my GP into giving me the enteric coated steroids which also alleviated the heartburn. If you're still on steroids make sure they are giving you the enteric coated. The GPs don't prescribe it normally as it is more expensive. Typical eh?

Right I'm off to bed. Love and hugs to all, June

I've just been reading all this and thinking how lucky I am with the doctors I'm seeing. My GP is really supportive even though it was him that bruised me. Doesn't help that most of my veins are thin and also quite deep set and not exactly ideal for removing blood from. And even the nurse that took the final set of blood tests at the renal clinic produced a bruise too - even though she smugly said it wouldn't bruise. Been on prednisolone since the end of August and that's been the main side effect, when the respiratory consultant said it can make you bruise more easily she really wasn't kidding!

Good news is that the blood tests indicate that prednisolone is working and currently most tests are returning or are within the normal range. Still doesn't stop me getting fed up with it all at times and still get tired more easily than I used to.

The respiratory consultant I'm seeing definitely thinks theres a link between weather and symptoms in sarcoidosis patients. Her experience is that there are 2 groups, 1 group tend to get worse and suffer more in the winter and quite often also have joint problems as an associated symptom, the 2nd group (which I'm in) tend to suffer more in the summer and tend to have the "more weird unusual" symptoms. In my case the fact that its affected kidney function.

Blood tests again next week so that when I go to the respiratory clinic mid-December there will be up to date results that she can look at. Or as she so nicely put it herself "If I get GPs or someone to take the blood tests then I'm seen as the nice one who never takes blood from my patients." She openly admits to being a sneaky so and so that way ;-)

Better start to think about working, Morag

Hi June,

I am still here, I was so worried about you though as you had to go in a kind of hurry.

Cant believe you are saying you felt guilty, this was beypnd your control and after all you have put so much information on this site you have contributed 10 fold.

So glad you are finally feeling a little better.

Blood tests....well I had a needle phobia before all this started so that has been a big hurdle for me...ha ha

The node is on the 'upper left'...

Amazing how your cats picked up the rad!

Such a great shame you are wary of having the operations on your wrists, when this could be of a great bebenefit for you.

That hospice needs to be named & shamed!!!

Wow you are the favourite one getting splints from NHS....

Sweat - yes this is probably my worst/main sympton at the moment.....and I have to remind people it is not 'my age' thing.

Anyway June soooooo pleased to hera you back again, you can rabbit all you like

MM

Hello, I actaully thought the same as you, as it was quiet there wasnt anything to report really.

Yes we do seem to be in a similar situation at the moment, although I am lucky that I am not on any tablets at present.

Lets hope a new year will bring us better health!

Take care x