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My welcome to the world of Sarcoidosis

Posted , 7 users are following.

dave84416
dave84416

On the 21st May 2014 I went to get the result from a mediastinoscopy sarcodosis on the 21st May 2014, I was admitted to hospital and then spent the next 18 days at the request of the NHS due to possibility that it was neurological sarcodosis.

My treatment started with IV treatment for the first 4 days and then moved on to the tablet treatment and after a lot of MRI and CT scans i was allowed to come back home, as they did not think that it was neurological sarcodosis.

BUT WHAT HAPPENS NEXT !!!!!!

 I was discharged with a big bag of medication and left to it as they say.

I have not been able to work for the first two weeks due to the fatigue, I would find that I would run out of energy but 12 o’clock then I would have to take to my bed.

 

My symptoms are

 

1 Chest Pain

2 Coughing up of Blood

3 Nights or Day Sweating

4 Short of Breath

5 Pins and needles in my left hand side Face Arm and Leg

6 My left hand will lock up and not

7 Pain in the eyes and excessive watering of the eyes

What should happen next should I have been seen by someone by now as I have been out of hospital for 1 month, my local GP is very good but it is not an area that he understands (at least he is honest) he has referred me back to the consultant at the hospital.

My GP has told me that I am only to work part time for the next two months and then he will review it again.

My questions are

 

I do not know how far this disease has gone in my body I am still waiting for a MRI scan of the heart to be done.

The medication that I am on could be working but if it is I do not feel any different than before.

New things appear every other day blisters on the face and head.

no power in the legs and arms

Has anybody out there got any idea what I should do next with this

 

All thoughts welcome

 Many Thanks

1 like, 16 replies

16 Replies

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  • gustav
    gustav dave84416

    Posted

    Hi! You most definitely should be seen urgently by your consultant for an up-to-date analysis of your condition. It doesn't sound to me like you've had a definitive diagnosis. You certainly shouldn't be left to it. Take care mate and keep me updated.
  • morag7
    morag7 dave84416

    Posted

    Hi Dave

    Sounds like you're having a bad time of it. I think if some of the others in this forum see your post they could probably say more on some of the symptoms you mention. I know some of them have some of the things you mention. 

    I agree with Gustav that what you should do is see a consultant as soon as possible, but at least your GP is on side and has set that in motion. Sarcoid isn't a condition that many doctors know much about - my GP is like yours, he admits his lack of knowledge so has passed on the treatment as far as possible to the consultants. 

    When you were discharged from hospital, its worrying to me that they've just given you a bag of medicines and not told you anything about them and said Get On With It. There should have been someone making sure you knew what everything was for and why they were giving it and such like stuff. I have postgrad qualifications in pharmacology and work in medical indexing (looking for drug information in scientific journals and reporting important findings to drug companys) so if you want to send a list of medications I can give you an idea of what they're all meant to be doing. 

    And if it makes you feel slightly less worried, sarcoidosis in the heart is pretty rare I'm told, so hopefully its not been affected. 

    Agree with Gustav, keep us posted. I think the best support comes from other people who actually understand what you're talking about when you say you're exhausted or whatever else.

    • gustav
      gustav morag7

      Posted

      Agree with all that! Hear hear!
    • dave84416
      dave84416 morag7

      Posted

      Hi Morag

      many thanks for the reply I guess that I should have asked more questions but after 18 days I did not want to hang around any longer I just wanted to get out of there before they changed their minds,

      here is the list of medication I know what a couple of items are for but not the rest, so here goes

      1 Fragmin

      2 Adcal D3 two a day

      3 Alendronic Acid once a week 70mg

      4 Amitriptyline once a day 10mg

      5 Atovastatin once a day 40mg

      6 Codine Phosphate four times a day 30mg

      7 Lansoprazole two twice a day 30mg

      8 Macrogol twice a day 13.125 g

      9 Paracetamol two tablets four times a day 500mg

      10 Perindopril once a day 2mg

      11 Prednisolone once a day 40mg

      12 Amoxocillin ( these are for a chest infection after being in hospital)

      13 Blue inhaler (this is for the chest infection) 

      that at is the lot so far 

      many thanks for your help on this

      Dave

  • rachael88657
    rachael88657 dave84416

    Posted

    I would say you need to be signed off as fatigue is so bad for you. You can't be expected to work if you are coughing up blood. Go back to your GP and ask for an urgent referral.

    you are not alone

  • di01694
    di01694 dave84416

    Posted

    Hi Dave,

    i also suffer from haemoptysis - coughing up blood - and had to have an embolisation to stop heavy bleeding from my lungs, which can be life threatening. I have been told coughing 100ml of red blood is the time to head for A&E. I suggest you ask those doing the MIR to also look at your lung arteries. I had the problem for some time but the consultants were looking at x-rays and standard CT scans which didn't show the problem, so they ignored it despite my efforts to tell them something was wrong. As a result, I had an emergency admission to hospital following an incident which could have been fatal.

    Di

    • ailsa_june
      ailsa_june di01694

      Posted

      I'm surprised that they don't do VQ scans so much these days or at least they don't seem to. VQ scans used to be the method of choice. There are 2 parts to a VQ scan - profusion which is the flow of blood through the lungs (this can easily show embolisms and clots) and ventilation which is the flow of air through the lungs. Both scan use radioisotopes. Inhaled in gas for the ventilation scan and injected for the profusion scan. I think they are much better than the MRI and CT scan and would have shown up your problem much quicker and better Di.These doctors who would be Gods eh?
  • ailsa_june
    ailsa_june dave84416

    Posted

    Hi Dave,

    I'm so sorry to hear what a bad time you have had and agree fully that you need to see your consultant again urgently. If you are not happy with him then it is your right to get a second opinion. Which is something I would do and I've been a nurse for many years.

    Your medication;

    Fragmin - to aid clotting of the blood (I take it that you have a clotting problem and bleed readily from injuries. You should be getting regular blood tests, at least weekly while you are on this.

    Adcal D3 - calcium and vitamin D suppliments - again your bloods should be checked regularily while on this. Quite frankly I am a little shocked to see they have prescribed more calcium when Sarcoidosis sufferers have impaired calcium metabolism which results in hypercalcaemia (too much calcium). This can lead to urinary stones, bone pain, abdominal pain arrhythmias (abnormal heart beats) in very high levels it can cause cardiac arrest.

    Alendronic acid - used to treat osteoporosis. you must read the instructions for this drug carefully and adhere to the instructions carefully. This drug can cause severe irritation to mouth and throat and dental hygiene is a must. I was on this for a short while but was too expensive for my GP! I already have osteoporosis of the lumbar spine.

    Amitriptyline -  for depression I'm also on this but I'm on 50mg and thankfully your on a very low dose 10mg

    Atovastatin - to reduce cholestoral (I'm on Simvastatin)

    Codeine phosphate - mild-moderate pain killer and cough suppressant

    Lansoprazole - stomach protection against its gastric acids (I'm on Omeprazole)

    Macrogol - for constipation

    Paracetamol - Mild-moderate pain relief

    Perindropril - to control high blood pressure and is an ACE inhibitor. People who have Sarcoidosis usually have high ACE angiotensin-converting enzyme in their blood so Perindropril inhibits its production. (I'm on atenolol for high blood pressure)

    Prednisolone - a corticosteroid which is an anti-inflammatory and auto-immune treatment

    Amoxicillin - used to treat bacterial infections

    Blue Inhaler (Salbutamol) - used to open up the airways for immediate effect. Eases chest tightness (I'm on Seretide 500)

    I am so shocked that the hospital and doctors have "left you to it". At the very least you need to have regular blood tests to monitor not only the disease but more importantly what effect the medication is having on you and your vital organs.

    I hope my interpretation of your drugs list helps but you really need to read every insert that came with your medication. You need to be aware of the side effects because it is too easy to blame every symptom on Sarcoidosis when in actual fact it could be a side effect you are experiencing.You also need to be aware of drug interaction. This is where one drug can seriously alter the effect of another drug. Not all doctors are on the ball and I've had to point out a few mistakes in prescribing especially when you are prescribed drugs on seperate occassions. If you are prescribed drugs all on the same day then chances are the pharmacist will pick up on any contraindicated drugs but if you read the drugs sheet that comes with your medication you will see everything from side effects to contraindications there. It's surprising how many of us don't even take it out of the box let alone read it!

    Write down everything that is concerning you and take it with you to the doctor's clinic that way you wont forget anything but please make an appointment for tomorrow and don't leave it to chance.

    Best of luck,

    Kindest regards,

    June

     

  • morag7
    morag7 dave84416

    Posted

    Hi there

    June got in there before me with the explanation of what all the drugs do so not too much to say there.

    Other than, I'd totally agree about the need for regular blood tests while you're on Fragmin and I'm surprised by the fact that you're on calcium supplement and vitamin D supplement. As June said, a lot of patients with sarcoid have excess levels of calcium in the blood, its one of the main indicators of problems in my case! I'd expect blood tests for that and for levels of ACE as well.

    Lansoprazole - yes its a stomach protectant, it might well be in there to prevent some of the gastric side effects of other medications. When I was on prednisolone the consultant also prescribed omeprazole because her experience is that lots of people get indigestion, nausea etc while on prednisolone. 

    And the thing my consultant puts in every single letter she sends - Make sure you drink plenty of fluids, patients with sarcoid are at higher risk of becoming dehydrated and it can worsen the condition. 

    • ailsa_june
      ailsa_june morag7

      Posted

      Really sorry Morag didn't mean to tread on toes. sad

       

    • morag7
      morag7 ailsa_june

      Posted

      Don't be daft, no toes trodden on. You answering means the answers were out there sooner as I was out last night and busy working all morning. I just added a couple of extra points that I could think of.More an example of great team work I say! :-)

       

    • ailsa_june
      ailsa_june morag7

      Posted

      You mean the Sarcoid busters?

      I realised after I'd posted that Dave had actually meant the post for you and I felt very rude having answered it. Not that it is any excuse but I am dyslexic and tend to glance over a post rather than read it thoroughly. So the apology stands, Sorry Morag.

      Naughty June smack on back of hands.

      xo

  • rachael88657
    rachael88657 dave84416

    Posted

    I rest my case! With June and Morags advice and knowledge what a team we have on here!
    • morag7
      morag7 rachael88657

      Posted

      June's idea - We are now the Sarcoid Busters.

      And I'd say we all contribute, I might know about the drugs but people like you know first hand how some of the symptoms that I've never experienced but others are affect you.

    • ailsa_june
      ailsa_june morag7

      Posted

      I now have this vision of marigold gloved people with fists waving and banners declaring "Down with Sarcoidosis!"

      Did I tell you I have a vivid imagination?

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