Sarcoidosis - not enough care and attention given to sufferers

Hi Sharon,

Glad to see that the consultant didn't mess about& got u straight onto medication. I hope you start to feel the effects very soon.

Xx

Hi All and welcome to the forum Sharon,

Glad to see you got on well with your consultant. I got the steroid injection over a year ago and must admit it really did help me, I felt like a teenager for a month after x

I have got an appointment tomorrow to see my new consultant, will see how this one plans out.. Probably just routine 6 month follow up, more bloods, checking weight etc...

I am same as you Sharon, love my job but quite often struggle due to health issues.. Especially due to fatigue and my forever fuzzy head . I can get pins and needles all over my head and face too which is very disturbing and can strip me from any ability to think, concentrate and even spell and type..

Like Linda my symptoms faded over the Summer and I felt much better but as winter arrived back so did my symptoms... Not as severe as they were in 2012 but they are still at present..

Wishing you all well

Love, MM

Hi all

I have a question if that's ok -

These injections and steroid tablets we seam to be all taken - are you taking them for long periods of time

Or is it just till you feel better - and if the symptoms come back do you start the treatment again -

As I'm reading bad withdrawal symptoms can be fealt on this type of medication x

And I do wish you good luck to day with your appointment mm x

Also I have been told to not go out in the sun to much because of vitamin d - getting to much is not to healthy for sarcoidosis - but reading your post mm looks like the sun is good for you x

Regards ps I'm going back to work I hope next week working just 4 days a week x

Hi MM,

hope all goes well with your new consultant tomorrow, is this a replacement for the previous one or a different clinic?

Hi Sharon - I cannot comment on medication as I am not on any yet.

But a very interesting question!!!

Like you I have heard mixed things re the sunshine......this will determine re booking a holiday this year as last year I didnt have one due to all the illness and appointments

HiSharon,

I'm so happy to hear that your appointment went well and I hope you will soon be feeling some positive effects from the steroids. I should have also pointed out that not all cases of Sarcoidosis is treated with medication. Some consultants feel that the sarcoidosis is not active enough to risk the side effects that can affect people on steroids. Also they have to take into consideration the patient's other medical history in case steroid therapy would exacerbate other conditions.

As for how long Sarcoidosis takes to go into remission, it's a bit like asking how long is a piece of string? It is different for different people and how they respond to treatment. Your consultant is only partially right and really should have said that Sarcoidosis goes into remission and not said it fades out and never comes back. Although I get that she wanted to give you positive feedback. There are members here who have had sarcoidosis for many years and during those years the Sarcoidosis has paled into the background only to resurface for reasons no one knows. There again there are people who have been in remission for many years and have never had another bout of Sarcoidosis.Sarcoidosis is unpredictable and isn't picky on who or how hard it attacks Some consultants tell their patients that it can last from 1 - 3 years while others say up to 10 years but you have to bare in mind that they are talking about remission not cure. At present there is no cure for Sarcoidosis as it is not known what causes it. Even the medication is given to treat the symptoms and not the actual Sarcoidosis.

I don't believe in giving people false hope but I am a great believer in positive thinking. I think you will soon be feeling much better and able to cope with the symptoms now that you are receiving treatment. I'm sure you must be feeling better today having been able to speak to a consultant who knew what they were talking about. There is nothing like fear of the unknown for making everything worse. Being exhausted all the time doesan't help either. We all know what it feels like to be tired when we have a common cold and have coughed our way through the night so when you times that by 20 and the dreadful fatigue that comes with Sarcoidosis it isn't hard to see why we find it hard to cope with the other symptoms.

You will probably find that Sarcoidosis has it's highs and lows. The initil well feeling you get on the medication can turn to a bout of mixed or singular symptoms flare up. I'm only telling you this so that you will be prepared and will not become negative about your treatment. Just take each day as it comes and try not to look at the bad days as a set back.

You could just as easily be someone who responds well to treatment and never has another bout of Sarcoidosis.

One very important thing I think we need to remember is, when we go into remission we must try not to attribute future ailments to our Sarcoidosis returning because I think it would show that we are not embracing the fact that we have beaten this particular bout of Sarcoidosis and negatively have been almost waiting for it to reappear or exacerbate. If the possibility of staying in remission is down to keeping a positive attitude then that is what we should try to do.

As usual I have gone on a bit. Me and my soapbox!!!!

Anyway at least it is spring now and with better weather ahead I'm sure we will all have a spring in our tails ha ha! Keep positive, keep well.

Big Hugs,

June xoxoxoxo

Hi June

I find comfort in reading your posts - you explain in a way I can understand with out feeling deflated -

And yes I intend to take it a day at a time - I wish my partner would be as supportive - as this foram so don't go away girls - unfortunately he feels when I'm of work I'm having extra holidays as he can not understand how feeling tied and stiff should stop me from working and well the cough and shortness of breath is just an excuse as he feels the same way - god love him he's a typical man x

Love s xxx

Hi again Sharon,

Just as I posted my reply I realised you had asked another question so sorry for missing it.

Steroid treatment is long term but the dose will be reduced once the sarcoidosis is better under control. Usually around 7.5mg - 10mg depending on what your consultant thinks is best. The length of time you are on steroids depends on how the Sarcoidosis reacts. You will be monitored very closely and your doctor should have given you a blue card which states that you are on steroids and how much. You must carry this with you always while you are on treatment to alert hospitals etc if you were to have an accident. The steroids greatly lowers your ability to fight infection and this is why you need to carry the card. You will have lots of blood tests and possibly other tests to which will show how the sarcoid is reacting and give the doctor an idea when to reduce the dose. Usually they only keep a patient on a high dose for a few weeks.

The withdrawal symptoms should not affect you so long as you follow the doctors guidance. You must never suddenly stop taking steroids. You must be gradually weaned off them over many weeks. The problem is that over time steroids knock out the thyroid glands ability to produce thyroxin so if you suddenly stop the steroids then your body is without the much needed hormone and you can go into thyroid crisis which is life threatening. So long as the medication is slowly reduced there should be no problem with withdrawal. Many people are on steroid treatment as it is a great anti inflammatory treatment and doctors wouldn't use it so much if there was a problem getting people off it. If after remission your sarcoidosis were to return it would depend on how bad the condition was as to whether the consultant would put you back on steroids, as I commented on my previous post.

You need to be careful in the sun as both Sarcoidosis and steroid treatment can cause problems. Steroids thins the skin so obviously you can't risk sun damage. Both the sarcoidosis and the treatment can cause eye problems such as photofobia. I actually have to have the curtains closed all the time. When you have sarcoidosis you already have too much calcium in your blood and as sunlight makes vitamin D you can see how sunshine and sarcoidosis just don't mix!

It is important to read the information that comes with every medication so that you are aware of side effects etc but try not to worry yourself too much about them as it is usually a small number of people who have problems with side effects and the good the treatment does often out-weighs the bad.

MM best of luck at your appointment. I hope they do more for you than just tests and have a solution to help you feel less poorly. I will be thinking of you.

Huge hugs

June xoxoxoxoxoxo

Thanks Girls,

It is the same clinic but consultant has changed. I didn't like the Pulmonary Professor much anyway, she was quite stuck up, arrogant, even rude at times and not the best of bed manners, on the contrary my Rheumatologist is good ( I will see her end of April).

I agree Sharon, Sun seems to do me good, I am not on Steroids since April last year (other than inhaler) so I don't have this issue .. Strangely my calcium levels are rather too low than too high in my blood, so I believe Sun is my Friend x I am careful tho and did not overdo the Sun last Summer (although what a lovely Summer that was) and dampness and cold seem to affect my joints badly.. I have also slept better in last few days, again, it has not been that wet and there has been loads of sunshine about.

I only had one steroid injection when I was at my worst to ease my symptoms, I think max they would give is 3 per year in very extreme circumstances.. Other than that more than one injection a year is not recommended.. Must be the amount you get in one go..

Hugs,

MM

Oh Sharon, I really feel for you. Some men need a good kick up the bum when it coms to their spouse's health. It's a different story when they have Man Flu! Next time he has a cold and is making a big fuss about how ill he feels, treat him the way he is treating you now and then ask him how he feels. You can then tell him that this is exactly how bad he made you feel.

Have you tried printing out some material on Sarcoidosis and making him sit down with you to read it? He might not be so quick to judge if he realises what this disease entails. People make me so angry when they assume things because they can't see hard evidence and tut and sigh because they think you are making more out of the illness. Sarcoidosis is a horrible disease because it has so many symptoms and leaves you feeling so exhausted but no one understands what the different symptoms and fatigue is like unless they have experienced them. The chronic fatigue alone is bad enough to want to throw in the towel. It's not like too much partying or too many late nights watching movies. It's not like the tiredness from working extra hours. It's not like the mental tiredness you get from studying or because you have an office job. It's not like the tiredness that goes away when you get a few early night's sleep. It is a physical and mental tiredness that leaves you so drained that no amount of sleep can fix it and when you feel like that it is not hard to understand why the other symptoms can feel even worse too.

Perhaps you could jog his memory about a time when he had an illness and how he said it made him feel then tell him to multiply it by 100 and that is what you are feeling. Don't be shy about telling him he is upsetting you because he is making out that there is little wrong with you. Sorry but he's being horrible and childish. Some men do need a bit of a shake to realise you are not their mum and it's not all about them all the time.

For any men reading this I know you are not all the same and a lot of you are very tuned in to your spouse's needs. My late husband was very good when I was ill but he also succumed to bouts of Man Flu too ha ha! However I looked after him when he felt ill and he looked after me when I felt ill and that is the way it should be.

You really do need to sit your partner down though Sharon, and talk him through what this disease is doing to you because it is as much a part of the healing process as taking medication. It's not fair that you are having to go through it alone. Yes of course we are all here to give support but we are faceless strangers whereas he should be giving you a supportive hug and telling you he is there for you as you would be for him if he were to fall ill. It could just have easily been him that was diagnosed with sarcoidosis so I wonder how he would have felt if you had reacted the way he is reacting to you. Maybe you should ask him. There is little doubt that women are the stronger species when it comes to illness but it's wrong that we are made to grin and bare it when we feel like the brown smelly stuff!

You keep your chin up girl. We are always here for you. I am so glad I can at least bring you some comfort and that the posts are helping you.

Really huge hugs

June XOXOXOXO

Hi Sharon

Having just gone through a treatment with steroids I figured I'd share my experience though June is quite rigght to say its different for every individual.

I was started on 20 mg/day, the respiratory consultant I see says 20-30 is the normal starting dose for sarcoidosis. I was on that dose for about 4 months with no change with regular blood tests throughout to check how things like calcium and kidney function were responding. If they hadn't started to return towards normal then the dose would have gone up.

As it was after 4 months the consultant decided to start reducing the dose. She did it as a reduction from 20 mg to 15 mg for 1 month, then down to 10 for 1 month, then 7.5, 5, 2.5 (each of those for 3-4 weeks) and now o. So definitely a very gradual reduction to stop the risk of side effects from sudden withdrawal.

I didn't get any of the usual side effects associated with steroids - a lot of folk say you put on weight, well I lost! So maybe I'm just weird. ;-) But the consultant I saw also insisted I get a prescription for omeprazole because higher doses can cause tummy problems. As I say it wasn't an issue for me but if you start to have problems at least its something to ask a GP about.

Hope that all helps

Morag

Hi Sharon,

Sorry to hear you are not getting the support u need from your partner. I agree with June definitely get him to read up on the condition so he has all the facts. You could also take him to a hospital appointment so he is aware of what's happening with you. I often feel guilty that due to the symptoms the condition it limits what I can do esp with the fatigue & joint pain and so my partner has to do more. I wish I didn't but I can't help it. Hope things get better for you x

Good lunch tmrw MM x

C x

Hi Sharon,

It is so frustrating when men really don't realise the depth of our complaint / illness.

My husband has come to most of my appointments with me and the ones he didnt my daughter did.

But he listens, asks questions, takes it all on board....but a couple of days later sometimes seems to have forgotten I am suffering.

I think this is due to being my own worst enemy as I tend to try to carry on as normal, so he probabaly

thinks I am ok.

Although I must say last year when I was first poorly he was very helpful.

But as said in previous posts when they are ill.....well it is a different ball game......

Maybe now and again say I have to rest I am feeling so tired & lethargis....maybe he will get the message!!!

Hi all and thank you x

Some really good advise from you all x

and if he don't listen then I might just give him a kick up the bum June x

Ps I also phoned the hospital today to ask about this blue card and I'm glad you mentioned it as they forgot to explain it to me and I will be given one on Thursday when I go for my lung tests -

Have a nice evening ladies and thank again x 🌹🌻🌺

Hi all

Hope you all had a nice week end .

I feel I have more energy on these steroids - I'm up and down the stair - went shopping - and a bit of gardening however I am still sleeping with four pillows as I get back pain and chest pain when I lye flat and breathing .

I don't think I have a trapped nerve in my leg as it feels a little better with the steroids - I was told I have a traped nerve as I get pins and needles in the out side of my left leg I have no feeling in it and when I walk I was getting stabbing pains but this week I felt fine when shopping .

I went to the hospital for my lung tests last week I hate these tests sat there for two hours blowing in and out that tube - and the nurse telling me I can do better - you sit there blowing out until the cough starts and you can not stop - I wet myself a little with the coughing it was so annoying -

My hospital also said I did not need a blue card because you only need one for injections and not the thirty gram of tablet form I'm taking - does not make spence to me but there you go - this is the Sunderland hospital x

Any way I have a meeting with my boss on Friday to discuss my return to work she is traveling down from Scotland to Newcastle which I thought was nice for her to do -

Hope your all well today big hug

I'm going to get out this bed know and do a little ironing today x who what fun xxx 🌺🌻🌹