Sarcoidosis - not enough care and attention given to sufferers

Hi ladies had a fab day at the metro centre

Chris bought me a pair of new trousers size 20 omg and a nice green blouse with shoes - my daughter got me some flowers and a voucher for marks and spencer as a shop there a lot for my size and they do the long leg which I need -

Thank you all very much for the birthday wishes hope you all have a good week 🌹🌻🌺😀

Happy Birthday Sharon. Glad you had a nice day xx

Cassy

My appointment with the resp consultant is finally here hurrah!! Well nearly, it's tomorrow. Feel like I've been waiting ages since my diagnosis Soo hope I get somewhere & I don't leave disappointed like I have so many times in the past.

Thanks again for all the advice you have all given me preceding this appointment

Cassy

Hello All,

HAPPY BIRTHDAY SHARON sorry it's so late in the day but better late than never!

Sorry for the delay in contributing to all the posts but was at my appointment and it always takes me a day or two to get over the trip for some reason. So having slept like Rip Van Winkle I am now back to my soapbox normal self ha ha!

The Blue card dilemma - I can only hazard a guess that some hospitals have decided it's an expense they can do without for people on lower doses of steroids. However, as an ex-nurse who has seen the benefit of patient's carrying steroid cards, I think it is a must that you should carry one and if they haven't given you one then I would suggest that you get a piece of thin blue cardboard, just a bit bigger than a credit card and fold it in two. In large writing, write; Steroid Treatment Card. On the inside left write your name and address, your date of birth and your CHI hospital number which you can get from your appointments letter. If you have room you can write your consultants name and the hospital you attend. On the right inner side of the card, write the date you started taking the steroid, the name of the steroid you are on and the strength. Remember to update your card when your consultant changes your prescription. All this information is very important should you become unwell and be unable to tell the people tending to you that you are on steroids. It's also a huge help even if you aren't on steroids as it will give the doctor tending to you the vital information of your hospital number which he can use to help him help you in a crisis. It also tells people who you are so they can contact family. People don't carry enough information about themselves really although you do have to balance it with privacy and security as you obviously wouldn't want everybody knowing your details. Carrying the blue card isn't just for times when you are unable to give information, it is also for when you go to the dentist (especially the dentist), optician, chiropodist, other doctors treating you for other ailments as they don't always have patient's notes to hand and often don't read them anyway so never assume a medical worker knows you are on, or have been on steroids. All these people need to know so they can take extra precautions in treating you because any invasive treatment they do can cause infection and for someone on steroids the risk of infection is very high. Remember that steroids don't just act as an anti-inflammatory they also suppress out your immune system and that is why you are more vulnerable to infection. You also need to show the pharmacist if you are going to buy any over-the-counter medication. They will be able to tell you if it is okay to use whatever medication you want to buy with your steroids. Even if you have stopped taking steroids it takes a long time for the medication to leave your body so until told otherwise you should continue to show your card to these people. When you think about it, the steroids have an accumulative effect so it's not surprising that they take so long to leave your body. If you run out of space as you continue to update the card, just add stick it notes inside the card, that way you will still be able to see all the information from day one. Sorry this is so long winded but I think it is very important. Even small doses of steroids could interact with other medication and give a bad reaction so I don't see why anyone would want to risk it and hospitals should rethink distributing them to everyone on steroid treatment. I wonder if they remember to give them out when a patient already on a low dose of steroids has their dosage increased!

Poor Linda, I'm really sorry to hear you are not faring well on the Amlodipine. You are probably feeling worse because some of the side effects are the same as the symptoms you get because of the Sarcoidosis - fatigue, nausea, palpatations. Funnily enough I have just been put on blood pressure meds too. Well it's a beta blocker really but as it controls my racing heart it should also lower my blood pressure. At the end of February I had a heavy nose bleed and although I was used to having nose bleeds since having Sarcoidosis this time I felt really unwell. My heart was racing out of my chest and I was getting terrible palpitation again (I hadn't had them for months) I also had a banging headache so I checked my blood pressure to find it was 174/107 and my pulse was an irregular 136 beats per minute. I was glad I had the nose bleed to relieve the high blood pressure but I was quite concerned. As I was going to see my consultant I decided to wait and tell him rather than go to my useless GP. My consultant was shocked that my GP hadn't been doing regular check ups on me. I had to tell him that my GP hadn't even read the latest letter from my last visit to clinic so you can imagine he was none to pleased! I have to say I couldn't understand why nothing was ever done to at least address the heart problem I've had since being diagnosed with Sarcoidosis. No wonder I am fatigued all the time as my resting heart rate is 120 beats per minute! I often watch reality programs about hospitals and I'm always shocked when I hear them saying how a patient's heartbeat is dangerously fast at just over 100 beats per minute and here is me racing at 120 - 136 beats per minute and nobody seems to care Weird! Anyway my consultant is hopefully sorting me out now. I honestly don't know what I would do without him.

I am delighted to tell you all that the scan I had done on my abdomen a couple of months ago was negative but it also showed the lower half of both lungs which were clear of Sarcoidosis. How great is that? I still have it in the top half but hey this is a huge step forward for me. The consultant said he remembered how unwell I was when he first met me and said he thought I was ready to throw in the towel which was true and I have a lot to thank him for. He has told me that I am one of the unlucky ones and will probably have to stay on steroids for the rest of my life. He said he knew this because when he tried to get me off the steroids before all my blood level shot up again. He said that he wants me to stay on the medication for another year and then we will reduce it to as low a level as we can while keeping the blood levels normal, which they are at the moment. He allows me to alter my steroids myself increasing or decreasing as my health dictates so who knows maybe over the years I might get off them completely. He did remark on how very moon-faced I am at present and that he thinks it is the steroids that are causing the high B/P because of my 2 1/2 stone weight increase. It's so hard to diet but I will have to try harder as I don't want more health problems developing.

I must be the only person who never experiences 'a high' on medication. I honestly didn't know that steroids could give you a buzz or give you more energy. It seems to work in reverse for me. Even the Oxycodone (Hillbilly Heroin) I'm one doesn't give me a buzz it just keeps my pain in check. I honestly don't get all this thing about using these drugs for recreation use. I'd make a pretty poor junkie thank goodness!

MM I was just thinking about what was making you feel so sick when I remembered that like me you are on Hydroxychloroquine aren't you? They make me feel dreadfully sick at times. Usually when I haven't eaten enough before taking them although I find that taking my Omeprazole a good hour or two before taking them works well. I hope this helps shed some light on why you are feeling so sick. I hope you have a really super holiday and come back super refreshed and ready to take on the world ha ha!

Sharon I am delighted to hear your appointment went well and that you are feeling a bit better but do look out for over-doing things because you think you are well. Lots of rest is very important so please don't over-do things or it could be one step forward and three back, if you get my meaning.

The nurse who did your respiratory test had no business telling you that you could do better. The whole point of the test is to see what you are capable of not to force you to blow harder than is comfortable. Next time, just stop the test and request another nurse or technician. It's not beneficial to your health if you are getting upset by this person. It made me so angry when I read what she had said. She obviously requires retraining as she doesn't know her job very well. At no time should any medical person make you 'force' the air in or out of your lungs. The object of the exercise is to record and graph the patient's ability to inhale normally and exhale as hard as possible not to strain in order to get a better reading. They just need readings so that they have a comparison for future tests. It's not a competition to see if she can make you burst a small capillary in your throat because she is causing you to cough so much. You can also refuse to continue if she is causing you to be upset. Stress only makes your Sarcoidosis worse. Not only that but I can totally understand how embarrassed you must have been feeling when the coughing caused you to wet yourself. I always wear an Always Ultra Plus pad during episodes of coughing. It has saved many an embarrassing moment for me.

As far as trapped nerves go, Sarcoidosis can also cause quite severe nerve problems. I get really bad episodes of pins and needles in my legs and the nerves are constantly jumping both in my arms and legs. I also suffer from really bad Carpal Tunnel Syndrome which is caused by the medial nerve in the wrist swelling up and no longer fitting comfortably in the carpal tunnel where it normally lies. I found that when they put my on Hydroxychloroquine it resolved a lot of the problems of the pins and needles although I still get some pain and the nerve jumping persists but all to a lesser degree. If your problem is getting too much for you perhaps you could talk to your doctor about trying the Hydroxychloroquine.

Cassy best of luck with your appointment. Remember to write everything down before you go so you don't forget to ask anything.

Sorry this is so long guys. I didn't want to miss out anything.

Big hugs all round,

June XOXOXOXOXO

One last bit of information.

I had a long chat with my consultant and told him what a great support forum we have here which he was delighted to hear about. When I told him I thought that there were far more people than 19 out of every 100,00 who gets Sarcoidosis, he totally shocked me when he told me that in the UK the highest instance of Sarcoidosis is in the West of Scotland and Ireland and that these people usually have the more chronic type of Sarcoidosis that requires steroid treatment. He said that although there is a higher instance of Sarcoidosis worldwide in Afro-American and Asian ethnicities and they usually suffer from the lesser symptoms of Sarcoidosis. I was really surprised as I thought the people who were most likely to get Sarcoidosis would also suffer from the greatest problems. He told me that people who have enlarged lymph nodes and the Erythema Nodosum rash usually don't need steroid treatment as the Sarcoidosis tends to burn itself out. The patients who have Pulmonary Sarcoidosis require steroid treatment long term.

He said that people with Sarcoidosis need to avoid becoming stressed as their Sarcoidosis always becomes worse the more stress they have. So events like Christmas, weddings, moving house etc etc all make your Sarcoidosis much worse if you let yourself get stressed. I know this is true of all things but we all really need to try hard not to let things stress us out if we want to beat our Sarcoidosis sooner rather than later. I also asked him if he knew of a way to make doctors across Britain more aware of Sarcoidosis so that they might diagnose it sooner instead of starting patients on TB drugs or putting patients through so many invasive tests. He actually said that Respiratory doctors already have Sarcoidosis in mind even though I told him that apart from me almost everyone else on the forum had been either misdiagnosed and started on a drugs regime or had not been diagnosed for many months as their doctor didn't really know what was wrong so obviously Sarcoidosis was not on their list of possible diseases. I told him I just thought that patients wouldn't have to be put at risk from side effects of TB drugs or left for so long when really they should have been receiving steroid treatment if doctors were made aware of how Sarcoidosis seems to be much more prevalent than first thought. I think a flier of sorts sent to all the major hospitals across the UK might have the desired affect but it would probably need to come from a medical centre for anyone to take notice. I wonder if the Sarcoidosis Association has ever thought to do that.

Anyone got any ideas?

Well I'm now off to my bed as it is very late. Really sorry for my inane rantings - just got to get these things off my chest lol

Be well all. Big hugs all round,

June XOXOXOXOXO

June

Some great thought and points here

Spot on

Thank you x

Hi All,

Glad to hear Sharon that you had a good Birthday  It is always lovely. Mine is week on Friday, hence the Holiday plans, I have not seen my Mum for 14 years on my Birthday so this will be a rare treat. She promised to make one of my childhood favourite meals and her beautiful apple cake. So exited that I can almost taste it already x

Thank you June for sharing this, above was a very good read. I never knew about West of Scotland or Ireland, I did know about Afro – Americans and thought the highest number was in Scandinavia, especially Swedish. I’ve got some Swedish back-round and have lived in West of Scotland for nearly 15 years, so that makes sense.

It makes sense that it could be on Hydroxychloroquine, I was feeling nausea before taking it but that could have been the Naproxen I was on, which is particularly damaging to stomach. I’ll try to remember to take Omeprazol first thing and an hour at least before anything else. Need t leave my self a massive note somewhere!

Hopefully your appointment goes well Cassy and that you get some long overdue answers

Love and health to you all

MM

Hi mm

I had a lovely day for my birthday thank you all x

I was taking naproxen for twenty years - I took it because I was told I had arthritis in my neck and it would also help with my endometriosis which I had an opp for some fifteen years ago and had my left overy and tube removed - but last year I was told to stop taking it - as this might of been the cause of my stiff joints and pins and needles in my legs - and for nine month I never took it and I felt no different to when I did - I think I took that for twenty years and never needed it - I also blami this for my liver problems know - but touch wood I feel good on these steroids - just carnt sleep very well but will hopefully settle down when I get them reduced -

Nice to hear about you mum and your birthday I hope you have a fab time x 🎊🎊

Hi Sharon,

Thank you, I will do x

Oh thats terrible, 20 year on them and for no reason.. Naproxen seems innocent but looks tlike it's the hidden evil one but doctors (consultant and GP) seem to think that it is OK to take it just incase.. I only just stopped taking it couple of weeks ago ( I was on max dose) As the Hydroxychloroquine takes few months to kick in. I have got most awfully stiff joints and heart burn and liver issues, so Naproxen could be the cause on this too? And I only just found out that one of the side effects is weight gain too.. Which might explain me putting on weight and I am eating less than I ever have.. OK, first it was the steroid injection but that is worn out now.. so has to be something else, sounds logical.. Thank you Sharon for sharing this.

I was the same when I had my injection, had trouble sleeping too but didn't seem to need it either. So hopefully it will pass for you soon

Love

MM

Hi MM and Sharon,

It makes me so cross when doctors put patients on medications and then basically forget about keeping a close check on them. Lets face it, most medication carries side effects but when you have a medication that already has a high risk of side effects the doctors should have a marker in place to remind him to regularly check the patient. I would have thought that it would be far easier for them nowadays with their computers, to highlight a patient or to have an alert to pop up at certain intervals for specific 'at risk' patients. How hard could it be? They shouldn't rely on patients to remind them either as not all patients read the drug insert or are made aware that they have to be checked on a regular basis. My God! Sharon, 20 years on Naproxen. A medication of this kind, (non steroidal anti-inflammatory) or any kind of medication for that matter, takes its toll on liver and kidneys as well as our poor stomach. Our poor old liver has a terrible job to do filtering everyday toxins and diet without the added burden of filtering medication.

One really great thing about our liver, is its ability to heal itself depending on how badly diseased it is. Given time, a good diet and a toxin-free life, the liver has the ability to regenerate itself but unfortunately if you are having to take strong medication then this regeneration is going to take much longer. Making sure you drink sufficient water every day really helps to detox the liver.

However,I honestly believe that if doctors kept a closer check on patients at risk, these patients might not end up with digestive problems in the first place. My previous GP used to be very good because every time I was put on a medication that could cause me digestive trouble, he would put me on a course of Omeprazole or similar to prevent problems occurring. There again I guess most doctors are too busy watching the purse strings to give a medication for a problem the patient doesn't yet have while missing the fact that it will cost them more if their patient becomes unwell because of the medication.

They used to use Ibuprofen a lot in the 70s not only as a NSAID but also because they discovered that it regulated women's periods, took care of period pain and also made the period lighter. Russian athletes were taking them to actually stop their periods! What I'm getting at is, a lot of drugs have other underlying uses so if medically you only have the one reason for taking the drug, it isn't beyond reason to think it could be upsetting another part of our anatomy that doesn't need fixing. I also remember that back in the 70s they were not really aware of how much damage NSAIDs did to the digestive system and often it wasn't until a patient presented with a gastric bleed that they knew there was any problem. I remember having quite a run of patients with gastric bleeds and the common denominator was NSAIDs. After this, doctors started to reduce the prescribed dosage, which at one time could be up to 600mg every 6 hours! They also started to prescribe antacids from the start rather than wait for the patient to complain about acid reflux and abdominal pain.

I'm sure everyone remembers when everyone and his wife was put on Valium comically known as the '1960s Housewife's Choice' or 'Mother's Little Helper' because it was given to so many housewives who were diagnosed with depression. These women were on this medication for many years without regulation. Some doctors were said to have the prescription written before the patient had even walked into his surgery! When it was finally decided how dangerous it was to continually have this drug, the real problems began because they found it was terribly difficult to 'wean' these poor women off them. This is a prime example of doctors not keeping a close check on the medication they prescribe.

MM, I definitely feel terribly nauseated if I take the Hydroxichloroquine without food and last week when I forgot my Omeprazole, I felt sick all day long. It was awful. It's also possible that a combination of meds is making you feel sick too. I have had to start taking the Hydroxychloroquine totally separate to all my other meds and this seems to have worked too.

I started putting my medication into a 7 day pill organiser and each night I put the next days pill organiser onto my bedside table along with a bottle of water (or juice) so that the first thing I do when I wake up is take my Omeprazole and my pain killers. This way I never forget to take that all important Omeprazole. Even if you were to put the Omeprazole into a medicine cup every night and cover it with tin foil or clear plastic wrap in case you knock it over, you probably wouldn't forget to take it. I am terrible for forgetting to take my medication on time so I found this a huge help. I can imagine how excited you are to go see your Mum and get spoilt for a while. You've got my mouth watering at the thought of the Apple Cake ha ha! I've put on 2 1/2 stone since taking steroids and my face is so swollen that the legs of my glasses have left a really deep indentations in both sides of my scalp! I don't eat a lot because I have no appetite but this time even the consultant noticed how moon-faced I'd become! It eventually goes away but can take a couple of years after stopping steroids!

Well as usual I've gone on and on and on...........sorry I don't get out enough but I hope some of what I've said might help or enlighten, which ever.

Give us a little thought when you are taking a nice big bite of your Mum's Apple Cake, MM and have a super birthday and holiday.

Sharon keep your chin up. I'm so happy to hear you had a great birthday.

Lots of hugs

June XOXOXO

Thank you Linda for your words of encouragement. I just wish I would learn to write less as I'm sure everyone must be fed up of reading such huge paragraphs. I've always been guilty of 'going all round the houses' when expressing a point.I'm sure it is lack of adult company that makes me write so much. Just can't get the cats to contribute to a conversation! lol

Hugs

June XOXOXO

Hi June,

No you don't go around the houses you merely explain things properly, which is good as things typed can sometimes get interpreted in various ways, so if it is written out clearly this is far easier to understand.

Also you do have such a lot of useful information to share, so why not as after all that is what this forum is for.

As you say this is something to keep you active if you do not have much company.

So I am sure I can speak on behalf of all of us on here....Keep up the good work.

It does really bug me when GP put our health at risk when it comes to finances.

Especially when it costs me £7.85 per prescription and due to be going up again. They just dont take into account when they prescribe things for a month then decide after a week no we will change that, so more expense for me/us, this happened to me so many times when I was first on medication for 'my unknown' illness.

I am back to my GP tomoorw to see what the next stage is after a week on BP, needless to say not awor from the eye hospital - hence my medication for Sarcoid still cannot be commenced.

Take care xxx

Hi everyone,

I guess most of us are on multiple drugs and prescription costs are high, especially for those who do not qualify for exemption. I'm on five different medications: four are taken daily and are on two monthly prescriptions, one is taken weekly and is on monthly prescription, plus antibiotics, etc when necessary. For the last few years I've bought an annual NHS prepayment card which at £104 is a huge saving. I'm not sure I could afford to be ill without it!

Di

Should I just really upset all of you South of the Border? In Scotland we don't pay for prescriptions - ever!!!! One of the things the Scottish Parliament introduced.

And the moral of this story - if you want to be ill come to sunny Scotland ;-)