Sarcoidosis - not enough care and attention given to sufferers

Hi Sharon,

As you've found out, steroids give you energy but be a bit careful as they can make you hyper! I was warned by the consultant who originally prescribed them for me that, if you're taking the pills at breakfast time, you shouldn't make any critical decisions in the late afternoon when they will be having their greatest effect.

The effect is accumulative so you should see even more of an improvement, and once your condition has stabilised the dose should be reduced gradually, for example by five mg a month. I know this seems very slow but the body reacts very badly to steroids being stopped suddenly. I have been told that it stops producing natural steroids altogether while you are taking artificial ones. However, you don't want to be on them for a long period as they have a list of side effects including weight gain, moon face, osteoporosis, thinning skin, etc, etc.

I had a trapped femoral nerve last autumn, which was very painful and pain killers did nothing to ease it. Steroids are anti inflamatories so they will help with any muscle pain and may ease nerve pain, but I didn't feel that they did. However movement did seem to help so possibly the fact you're up and about again has helped.

I think your hospital is wrong on the blue card. It's like a medical alert bracelet, it lets people know you're on steroids should you be unconscious and unable to tell them. Ask your GP for one - or a pharmacist.

Good luck with your job, I hope you are meeting your boss in the morning!

Re the blue card thing - I was told the same as Sharon by my consultant when she started me on steroids. You don't need the card unless you're either on injection steroids or taking a regular dose of 40 mg or more on a long term basis. Its probably one of those things where they change the rules every so often just for the fun of it to confuse everyone.

She also said the same as you, Di, that the steroids you get prevent your body from making its own naturally. Because it senses a high level in the blood it has a feedback mechanism that stops itself from making more. So when you start to come off them you have to do it very gradually to ease the body's own mechanism into making them again - otherwise you go from a really high level to virtually nothing which can cause more problems.

Good luck with the meeting with your boss. Don't let them make you do more than you feel ready for though! Steroids can give you a false high of energy that won't necessarily last when you start to be weaned off them.

Better start some work myself now

Morag

Hi All and Happy Monday,

I agree, steroids make you hyper. I could not sleep for about a month after my injection but was not tired either. Felt like I was 20 again, haha. Not feeling it today though, so tired and having my morning sickness feeling again (exactly like when I was pregnant) ..

Glad to hear Sharon that you got your meds sorted and meeting up with your Boss, tell her exactly how it is, not every day is the same.. and that you'll have some good and some not so good times.

Looking forward to my wee break, I'll be off for 2 weeks from week on Wednesday, cannot wait.. Will go and visit my mum and aunt and will try to recharge my batteries. Leaving my teenagers and hubby home with our cats , so proper break from it all x

Met my new Pulmonary Consultant on Thursday, she is lovely and kind. Had an X-ray and will go back for some breathing tests, if all OK and under control then I do not need to go back until March 2015, unless I feel that my condition with lungs is getting worse. Next appointment is end of April to my Rheumatologist.

Love to you all,

Take care x

MM

Hi MM and Morag and Sharon,

The change with the blue card must have been in the last year or so, as I had a steroid prescription filled at the Brompton fairly recently and they gave me (yet another) blue card. I have been on steroids since 2002, with a couple of breaks, but my symptoms have always flared up again and I have been told I'll probably never get off them. But never say never, I'm very well at the movement and provided my eyes are OK should have my steroid dose reduced this year.

I also went through a period of feeling really sick in the morning, and I'm far too old for morning sickness! I took an over the counter anti sickness medicine which helped, as did peppermint oil capsules which are for IBS. It did stop eventually, yet another passing Sarcoidosis symptom.

Hi Di,

Thank you, I will give the peppermint oil capsules a try. There is no reason for my morning sickness either and lasts longer into the day than the pregnancy related morning sickness ever did I will ask my GP about the sickness medication, hopefully he can come up with something

Appreciate your help,

MM

Hi Ladies,

Hope you are all keeping well.

Good to learn about the blue card and the peppermint capsules!

I have still not heard back from the eye hospital, I emailed my consultant to ask her to contact them, her

secretary rang me a few times on Friday and he had spoke to the secretary at the eye hospital who promised to get back to him that afternoon........

I had a call from my GP on Thursday [as not been for over a year since attending hospital]

In fact it was the head practioner who I had never met.

He said the main reason was to check my BP, ironically he hadnt got the recent letter from my consultant

which I had recieved over a week ago.

He was very good and went through a few things with me, he has out me back on BP tablets but he said Ramiprol that I was on last year were too mild. My lowest reading of 4 was 166/98

I enlightened him on the lates situation re my medication being held up by the eye hospital, he was mortified and told me to get onto the CEO of the hospital and demand a reposnse in writing within 24 hours.

This I intended to do yeterday but it slipped my mind, but I did rring my consultants secretary and left a message.

I recall some of you saying about rashes, I am not sure if this is related but a few days ago I developed a rash on a small section of my right hand it is like small red blisters, sometimes can become itchy and quite raised in that area

It was sheer coincidence it came up the day after taking the new BP tablets.

Kind regards Linda xxx

Hi Linda

What's up with your eyes - are they sore and sticky .

Sorry to hear that your medication is taking a long time x

I was wanting to ask if I can take paracetamol for my headache with the steroids x if anyone knows x

Also I was only given these tablets for two weeks and I was told I would get an appointment to come back before they ran out - but if I don't get an appointment as hospitals are a bit slow with appointments - would you suggest I go to my gp for more or just let them run out - only I feel good this morning I was up and shower and dry my own hair and then went shopping and I have not done this for about two years x

I feel normal emotional and excited - but I have not forgot what you say about being carefully x

And it's my birthday on Wednesday girls - 46 🌹🌻🌺🎉🎂

Hi Sharon,

Well it is my vision basically.

It was all fine before I started on TB medication /Sarcoid struck.

I ended up with Uveitus in one eye and detached jelly from the other, causing black spots appearing.

It has all settled down a little but my vision is poor now and wont get any better, ironically I dont need reading glasses.

I have had glasses for driving at night for past couple of years but now when I drive in the day I wear them as an aid, but dont really drive far these days due to it.

Now the consultant has stated I need to go on medication for the Sarcoid, but unfortunatly the one she is suggesting had bad effects on the yes, so we are awaiting to hear from the eye professor, although he dishcarged me in January as there was no cure and no more they could do for me at the eye hospital.

But they will not proceed with this medication until he has agreed, which again worries me due to the fact ive been discharged from the eye hospital - he may just say yes it is fine!!!!due to the fact I am not under him now.

So glad to hear that you are feeling so much better.

Be good for you to celebrate your birthday in style and enjoy it this year.

xxx

Hi Sharon

If the steroids are going to run out before you see the consultant again get in touch with your GP and get them to prescribe more. Its really important that you don't go from a high dose to nothing even if you've only been on steroids for a short time. I had to do that too and it was no problem to get a prescription for more.

And yes its fine to take paracetamol for headaches etc while you're on steroids. Thats not a problem at all.

Have a great birthday

Morag

Not sure I am liking these new BP tablets AMLODIPINE , I feel worse since I have been on them, I am seeing my GP again on Friday so be interesting to see what he says.

Is anyone else on these?

HAPPY BIRTHDAY SHARON XXX

HOPE YOU ARE HAVING A LOVELY DAY

ENJOY

Ditto Linda, Happy Birthday Sharon, hope you are having a great day

I'm on amlodipine 5 mg which I think is the lowest dose. Changed to that instead of ramipril which worked for me but I was told I had to stop it because it has the potential to affect kidney function. So while sarcoidosis was affecting my kidneys I couldn't use it. They're now trying to reintroduce it and get rid of amlodipine which has never done as good a job at controlling my BP as ramipril did. Plus right from the word go I suffered from swollen ankles and feet - so bad that they've had to give me a diuretic to counteract the effects of amlodipine. So I'll be thrilled if I'm allowed to stop it!

Hope you get some help from the doctor on Friday.

Morag

To Sharon

Happy Birthday to You, Happy Birthday to You.

Have a great day

Morag

Happy Birthday Sharon! Have a great day and may your health continue to improve