Sarcoidosis - not enough care and attention given to sufferers

Hi Cassy

Don't know about other folk's experience but mine is that the consultant starts with a relatively high dose then gradually reduces. Her view (and I think its the same with most resp consultants) is that experience shows a low dose doesn't have much of an effect so start higher then reduce when you see the symptoms of the disease starting to go. Having said that she doesn't start as high as some - she started me with 30 mg/day and says its not unknown to go up as high as 40 mg or even 50 mg. 

I was on that high dose for several months and getting blood tests every 4 wk throughout so the consultant could monitor what was going on. Then after a few months, she reduced it to 25 mg then 20 mg over the next 2-3 months. And after that down to 15, then 10, then 7.5 then 5, then 2.5 mg and currently nothing! But still with the blood tests ongoing. 

So my experience is that I was on a high dose for about 5 months then a gradual reduction over the next 5 months. And I'm one of the patients my consultant says had a brilliant response. So don't be too surprised/disappointed if it turns out you're on them for quite a while. 

Its actually considered dangerous to reduce the dose too quickly. Steroids are basically replacing your own body's adrenal hormones (at least that's whats meant to happen) so if you've been on a high dose if you stop taking them too quickly then you can end up in the situation where you have no cortisol or other natural steroids in your body. You have to reduce gradually so your body has time to react and start making the correct amount.

As for the side effects, well yes steroids can have a lot of potentia side effects and loads of folk on this forum can probably tell you more about them than me. For instance they warned me I would probably put on weight - I lost a stone while I was on them! The only side effect I had was to bruise more easily than normal, and I bruise easily to begin with. But blue and purple and such like, that's a normal skin colour set isn't it? ;-)

My point there is that yeah there are lots of side effects and its good to be informed about them. But you might not actually get any of them

Hope it all goes well when you see the consultant. Don't be afraid to ask him/her questions, its part of their job to ensure you're informed properly about your treatment!

Hi Cassy, yes the heat is too much. I'm melting!

You are definitely not ignorant Cassy. I've nursed for years and only consider that I know a small part of medicine. You never stop learning that is for sure.

The reason for wanting the steroids reduced is mainly because of the risks and side effects. It can cause a multitude of problems while doing a really good job of dealing with your sarcoidosis.

It can cause osteoporosis, brittle bones diabetes, raised blood pressure and it can cause side effects that are similar to the sarcoidosis symptoms so it's difficult to know which are which.

More importantly is, the longer you are on them the longer it takes to come off them . It is thought that being on steroids for longer than 3 weeks can cause really bad side effects.

Because the steroids are so close to your natural corticol hormone produced in your adrenal cortex, the steroids take over, as the body thinks it has enough corticol hormone circulating and therefore shuts off the natural production. If you were to suddenly stop the steroids the body would have no cortisol and it would go into crisis. This is why it is essential to come off steroids very slowly. This way the body will restart producing cortisol itself because it will detect that circulating cortisol is low.

I can honestly say that for me it was far better to be on steroids than not to be on them. I have felt so much better since starting them 2 1/2 years ago. It is a case of weighing up what is best for you and you can only do this if you discuss it at length with a good doctor. Everyone reacts differently to medication no matter what it is. We are all different chemically and physically too which is something doctors don't take into consideration. A small statured person who is thin does not necessarily need the same strength medication as a taller fatter person. We all metabolise at different rates which can be due to the fact that some of us have a good filtration system i.e. good liver and kidneys, while others maybe don't which could simply be due to bad genes or bad habits (too much vino perhaps!!!). The more body fat the harder it is to get medication to perform the way we want. Chemically we are different because even something as simple as whether your system would test more alcohol, acid or neutral could determine how our body reacts to medication or infection come to that. I really wis they would do more research on things like this especially a patient's stature. I'm only 4' 11 1/2" and honestly I can take a child's dosage of medicine and it works. I think this is why I reacted so badly to the 60mg of steroids the doctor first put me on. Since then he has always started me on a very low dose of any drug he prescribes and so far it has worked.. This sort of answers your question about being on the lower dosage of steroids. Arguably it should be easier to cope with side effects but it depends on the side effect and on the person suffering.

Normally for treating a immune disease the prescription starts high and then reduces down although some doctors prefer to do it the other way round. The reason for starting with a high dose is because sarcoidosis can cause serious damage to your body so they need to get it under control asap rather than allowing it to cause things like scarring in the lungs and heart or damage to the kidneys. Having sarcoid in the heart is the most dangerous place to have sarcoid.

I hope I have managed to answer all your questions. Let me know if you are still confused. I do tend to go round the houses to answer things ha ha!

Hugs,

June x

I started on 60mg prednisolone but being a wee person it turned out to be too high a dosage and I really was quite ill. 60mg is the highest prescribed that I know of so probably somewhere between  45mg and 30mg depending on how bad the sarcoidosis is would be enough for anyone.

Hi Morag,

I'm in need of your drug knowledge, please.

Tomorrow (Monday), I'm at Gartnaval hospital for dental surgery. I'm having all my top teeth removed due to the damage done by normal wear and tear and by drug and disease damage.

I went for an assessment two weeks ago and the dental surgeon told me to take a double dose of steroids on the morning of surgery. I'm a bit puzzled about this because I though taking the steroids was in order to knock out my imune system which as we know leaves us open to infection. What do you think? Will taking double the steroids leave me more open to infection in my mouth after all those extractions. I'm tempted to leave my steroids at the normal dose but I thought with your wealth of drug knowledge you might have come across this before and know what the thinking behind it is.

How are you coping with this heat? Was yesterday the worst heat ever where you are? OMG! I could bearly breath not to say I was convinced I was going to melt and be found in a big pool of slurry! Oh Yuk!

My electricity bill is going sky high with having a tower fan on all the time but honestly I almost can't bare this heat. I know I sjouldn't be moaning but it is so airless. I don't know how these poor athletes can run etc in it. It must be one of the hottest summers in Glasgow for a very long time.

What part of Glasgow are you in, Morag (if you'd rather not say I totally understand). I'm in the East End which probably explains why I'm not happy here. I think the area I'm in was the only one that didn't get done up for the Commonwealth Games! Dalmarnock is very close to here and I didn't even recognise it when a very kind taxi driver decided I needed a trip to see the improvements.

Anyway, I hope you can find an answer to my question or even tell me what you would do in the same situation.

Many thanks,

June x

Hi June

They quite often prescribe a dose of steroids (usually dexamethasone but others would do instead) if you're having a general anesthetic. Its used to prevent nausea and vomiting induced by the anaesthetic which can be really really bad. So if you're have a general and being knocked out for the dentist then I'd say taking a double dose for once should be fine. If the plan is to do it by local anaesthetic eg lidocaine injections then I wouldn't bother changing the dose at all because its normal to suffer those side effects from a local. 

Its one of those things where steroids do umpteen different things so the dental surgeon will be looking at the antiemetic properties. 

The last few days have been just too too hot. Glasgow on Wednesday felt the worst because of all the reflected heat from the buildings but the other days have been roasting too!

I'm not quite in Glasgow, I'm in Dumbarton - about 15 miles from the centre of Glasgow, out to the West and a few miles from Loch Lomond. Gartnavel is on my train line into central Glasgow. But so far I've been able to access all my clinics etc at the Vale of Leven hospital in Alexandria, just a few min drive away. I have friends in Sandyhills though, which is out your way, who used to live on London Rd out near Parkhead. And an aunt was in Garrowhill for many years. So I know wee bits of the area. Must be a bit of a nightmare for you if you're anywhere near the Games arena or the Village because I gather loads of roads are closed or diversions in place.

Good luck at the dentist - my personal idea of a nightmare!

Morag

Thank you Morag. I'm pretty sure its local anaesthetic as she told me to have my breakfast. It is going to be a nightmare - 100 injections! Sorry I exagerate it just feels like 100 injections!

I think I will leave the dose as is like you say. I'm terribly sensitive to drug change anyway.

I've only been in this part of Glasgow since June 2012. I was in Pollakshaws for 5 years before that.

I'm not originally from Glasgow and only came here on return from China because my daughter, husband and granddaughter lived here. I'm originally from a little village called Findhorn on the Moray Firth. I lived for 14 years in Merseyside and would really love to retire to Derbyshire where my late husband and I spent many hours hiking of a weekend.

Ah those pipe dreams eh?

It thankfully has cooled down tonight so hopefully we will all get a good night's sleep. I'm ashamed to say I slept until 4.00pm this afternoon. I was shocked when I woke up and looked at the clock.

Oh well off to bed again now. Thanks again for you help and good wishes. They honestly mean a lot to me

June x

 

Hey I'm originally from Glasgow. Born at Yorkhill then lived in Pollockshields for a year or 2 before we moved because of dad's work. 

Your dental surgeon probably told you all this too so ignore me if I'm telling you a load of stuff you already know. But I recently had teeth out with my dentist and he had a patient information sheet to hand out after the procedure. 

So his main things are:

start taking pain killers within 2 hours of surgery, before the local anaesthetic starts to wear off! No point in suffering pain by waiting till its worn off then having to wait for ages for the pain killers to start to work. 

use a warm (not hot!) gargle with salty water at least 6 times a day for the first 2 days (to reduce the risk of infection) then reduce down to 3-4 times a day till the gums have healed.

Remember its not just having teeth out, its a minor surgical procedure. So don't try and do too much until you feel ready, especially if you have any underlying condition, otherwise you'll probably feel like you've done a few rounds with Mike Tyson

eat soft foods for the first few days - like who in their right mind would do anything else I wonder.

Like I say, I'm probably teaching my grandmother to suck eggs but its just my way of saying look after yourself!

Can I just add a few point for post op instructions June

you shouldn’t rinse for the first 24 hours & when you start the day after Do not spit out forcefully! Rinse after every meal and snack, making sure that the water removes any bits of food around the area where the teeth are missing.

Your dentist may also advise you to use chlorhexidine mouth rinse (Corsodyl) to kill any oral bacteria.

When brushing be careful not to dislodge the blood clot when brushing near the extraction site for 3-4 days. You can carefully wipe the area with a clean, wet gauze pad. If you can’t get a toothbrush into your mouth due to swelling or discomfort chlorhexidine mouthwash can be used as an alternative.

Like Morag said you are probably aware of all this but just wanted to add these points

Take care & take it easy xx 

 

Thank you Morag I will follow your steps. It certainly sounds like good information to me!

Luckily I am on Oxycontin MR 70mg twice a day and Oxynorm solution 5mls when necessary for break through pain so that should dampen down any pain.

My big worry is that I suffer from CRPS Complex Regional Pain Syndrome and always worry that it will spring up in a new place because of any shock to the system such a lot of dental surgery. I will just think positively and remember to relax throughout the whole ordeal. I hope the surgeon has a strong wrist too as I have long hooked roots!

I'm sure I will be fine and everything will go smoothly. Maybe I could ask the dental nurse to stand behind the chair and hit me with a mallet if it becomes difficult ha ha! When I first met the team they were so lovely. They couldn't do enough for me and it wasn't the easiest thing getting me from my wheelchair onto the couch.

I'm always calling myself Jabba the Hut and now I will be even more like him - He doesn't have teeth either ha ha ha!

Right I'm definitely off to bed.

Night night

June x

Hope you are feeling better now June, sorry to hear of all your troubles. Findhorn! This is one of the nicest places on earth and the new age hippy community is an interesting and spiritual visit indeed! I love that place and Moray Firth with beautiful views and dolphines. I live in East Kilbride (so other than train station I managed to pretty much avoid the games rush) and only really go to Hairmyres hospital (they tried to send me to Wishaw couple of times but it is most ackward place for me to get to, so I declined the offers)

Love, MM

Hi 

I have been in Devon since Thursday helping my inlaws get organised for their move do i note I've missed a lot of postings but here wishing you all the best for tomorrow and hoping all goes well x

Hi Linda, thank you so much for your wishes.

You know this place it's very rarely quiet ha ha!.

I hope you didn't overtire yourself in Devon. Did you manage to enjoy Devon as well as working? It is lovely down there I have to say.

Try and get a good rest now that you are back or it will catch up with you before you know it.

I'm going to be a real live GUMMY  bear ha ha!  Now if I just had teeth like this!

I clearly missed this argument as well - had a really hectic time with my work over the last few days so haven't been following everything that closely. 

But I'd totally agree with June here. Whatever has been said by anyone was almost certainly just people expressing their opinions and not trying to deliberately upset others. 

So lets all just carry on posting our comments and supporting each other whether we all share the same opinions or not.  

Good luck tomorrow June. I imagine with your phobia it will be a difficult day for you. The dental hospital will be used to treating phobic patients & so I'm sure they will do their best to put you at ease. Xx

It was very tiring g but we also had chilling time by going out for meals every evening but great satisfaction.  They are moving to Clacton decided to downsize and buy a retirement home

Once tomorrow is over I'm sure you will be eased with the outcome and soon be sucking your food ha ha. 

Take care. Look forward to hearing from you when you are back on here xx

Thank You Cassy,

To be honest I'm phobic because I'm convinced everything will go wrong. I call it the "Jonah Syndrome". I can't seem to do anything or go anywhere without something going wrong so this is what causes the phobias more than anything. Luckily my daughter is come with me so that will help me stay calm. I don't want her to see me frightened.

She came with me the first time and because the staff were so nice she was able to go see her own regular dentist as they had made her feel so calm.

I look at it this way, by 1.00pm tomorrow it will be all over and I will probably look back and wonder what all the fuss was about.

I never used to be like this. Illness seems to do more than just make us feel unwell.

x

Yeah! anybody got a straw?

Hi Morag,

I can't remember if I asked already (I'm getting confused with all the different sarcoid forums now) but, what is your advice on a nasty whitlow on my big toe. I have finally managed to get some magnesium sulphate paste as nothing else was working. It is so painful because I already have altered sensation in both feet due to nerve damage and can barely manage to touch them let alone treat them. I did mention it to my crazy GP who seemed to be having more fun playing on his chair by rolling back and forth and saying he wanted to have something nice for himself than he was treating me! It's the first time I've met him. He is the senior GP and I now get why one of the other doctors was complaining about him puting all the work onto him. He just didn't seem to be on this planet. I did notice the patient before me looked heavenwards as she left his office. Now I know why!!!!! Anyway he didn't reply to my question about the whitlow so I'm guessing that he doesn't know what a whitlow is. He is Chinese so I was kind of hoping he would have known of a good treatment. I always found the Chinese doctors I went to when I lived in China to be excellent. They used to treat me half with Chinese medicine and half western medicine as they used to tell me my system wouldn't take only Chinese medicine. It neer ceased to amaze me how quickly I recovered from illness.

I'm hoping the metronidazole and clarithromycin might sort it out as well as my mouth infection. I was soaking it in salt water every night but it wasn't improving so I gave that up. Any suggestion would be most appreciated.

June x

I wonder if propolis might help June I know it works for herpes although it smarts like crazy but works quicker than conventional medicine preparations. No harm in asking though.

rachael

It might but I think I will stick to the Daktarin as it is working so well. I will keep a note of the propolis and if the infection returns I will give it a go.

Thanks so much

June x

Hi June

Most of the stuff I've read says that a whitlow tends to be nasty and should be taken seriously by a GP. But so much for that one! Antibiotics are normally reccomended so hopefully the clarithromycin + metronidazole combo will help it. The "alternative" remedies tend to be magnesium sulfphate paste or soaking in warm salty water, along with bursting the blistered area if its really badly swollen to get rid of the pus. Don't know I'd fancy that if its as sore as you're describing.

Propolis has been shown in studies to be effective for mouth ulcers and cold sores (herpes type infections) but all the info on it for other things is anecdotal. That doesn't mean it won't help, it just means nobody has ever done a clinical study into its efficacy for treating other conditions. The book I have also says its very useful for bringing up a sheen on the grain of the wood if you have a violin or viola though :-)

Maybe its worth going back to the GP if the antibiotics for your mouth don't help, but I'd stick with them and the paste until the course is finished rather than end up taking 2 different sorts at the same time. 

Definitely ask first before using propolis as it is a bee product and I'd hate to think you have an allergic reaction. Think you have enough on your plate to contend with!

Just remembered that Thuja may be of some help too but of course you need to check with a herbalist first. My son had a nasty case of warts at the top of his legs that were so painful he could not wear anything next to his skin. He too is violently allergic to antibiotics so herbal help was called for!

I think the whitlow is responding to the magnesium sulphate or maybe it's the antibiotics or both. Anyway the pain is a bit less so fingers crossed. Unfortunately it's the nerve damage that makes my feet untouchable. It will never be better thanks to the idiot doctor and his scalpel. I did manage to burst the abcess with a quick movement of a sterile scalpel and there was brief relieve until it filled again.The magnesium sulphate is supposed to draw the pus so maybe one more bursting of it will do. I will have to get all brave again before I do it! If it isn't better in the next few  days I try and see one of the other practice doctors.

I hate the bitter taste in my mouth all the time form the antibiotics . Even the mouthwash doesn't take it away. I guess I'm stuck with it until the antibiotics are finished. Shouldn't moan so long as they are working everything can be tolerated.

xx

It's okay Rachael, I'm not allergic to bee products. I love honey but most of all the when it comes with the comb. We used to use honey on wounds because of it's healing qualities. We also used to use egg white and oxygen for treating deep bed sores. I think todays nurses would think us mad but I've seen it work.

I used to use Bach's remedies. I had the whole range and read up on it all. People used to swear by the different mixtures I made up but I was a bit sceptical that it might have been more psychological healing than the remedies.

The herbal medication is different of course and just as well you and your son benefited from it or goodness knows how the two of you would have faired with your infections etc.

Thank you for the advice

xx

Regrettably June I have so many allergies to drugs I am a nitemare to treat! I've had drs stood at the end of my bed looking in disbelief that I have reacted to something after surgery and struggle to determine what the culprit is and what to do to counteract the reaction! Paramedics too have been caught out too when they thought I was having a heart attack and sprayed my tongue. Had to pick me up as I reacted so violently to it! Pray I don't have a heart attack cos I'll be in deep trouble. Pain killers too don't sit well with me so a bit of a clinical freak one way and another! Or as my GP said you really don't do drugs do you?!

Your not a freak Rachael, I have come across people in your situation albeit not many. There again when you think your immune system is everything so when it goes wrong it really goes wrong. All the allergies are probably brought about because your immune system doesn't work properly.

I only have a couple of drug allergies such as codeine based drugs and penicillin but the doctors have to often prescribe a child's dose of medication because I can react badly to the full dosage. I have found that this works. I often think that drug companies don't take a persons size into consideration when saying how much of the drug should be prescribed. I am only 4'11 1/2" now (was 5' 1/2" once) so internal organs are not as big as a person who is say, 5' 8". My granddaughter is taller than me and is 12 years old. You always see the drug insert warning to give half the doseage to children between 3 and 12 or 6 and 12 etc. Also men and women's metabolism is slightly different but you don't see a difference in prescription taking this into consideration. Maybe a much smaller dose for you might be tolerated but I doubt you would want to try after the terrible experiences you've had.

I found I had to advise my daughter to take a childs dose of paracetamol because she can't tolerate an adults dose. She is also only 5' 2".

I understand how worrying it must be for you when you get sick. It's bad enough having anything wrong with you without making the situation worse. All I can say is please keep well.

June x

 

Thank you for your kind words of consolation June indeed there have been times when it all feels too much to cope with but all is rosy in the garden at the mo long may it last!

Rachael, you're not a freak just because you're sensitive to a lot of different drugs! You are yourself, a unique and wonderful person just like the rest of us. 

When you think about it, if you're allergic to just 1 drug in a specific type you're probably going to have some degree of allergy or sensitivity to the others. If you can't use one codeine based pain killer for instance you probably can't use anything that has a trace of the stuff. So really its like having a problem with 1 component of several drugs rather than having a problem with a lot of different drugs. Its just in your case theres more than 1 type of drug your body is sensitive to. 

Hopefully whenever they discover you've had a reaction to something doctors are adding it to your notes; its in their best interest to make it easier for them to treat you in the future after all.

Look after yourself

Thank you Morag nice to hear from somebody who understands. Sometimes though it is quite unnerving for both parties!

Well said, morag.  I know I'm from the US and that shouldn't matter to anyone as I'm dealing with some of the same issues and I have been dealing with it for 10 years.  I finally ran across this site and was very excited to be able to interact with people who understand what I'm feeling as well as me understanding them.  I do thank all who have been very welcoming and if ever I do offend or you offend (not Morag) just anyone please do talk with me regarding it in a private message.  I understand the UK and US way of talking is a bit different so the true meaning could be mistaken for something offensive.  I am very understanding and feel if anyone is here it's because they, too, aren't feeling well.  I do wish all of you heartfelt well wishes.

frustrated