Sarcoidosis treatment

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Hi I am being offered cyclophosphamideas a treatment for my sarcoidosis. Has anyone else tried this it is a form of Chemothreapy. Am a little anxious but so desperate to get my life back.  

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  • Posted

    Hi there

    I've never received cyclophosphamide but then, compared with a lot of others, I'd say I'm probably a pretty mild case. 

    While cyclophosphamide is used as a form of chemotherapy, it also acts as an immunosuppressant. So it should reduce some of the activity of your immune system; one of the theories (which is a fairly widely held one) is that sarcoidosis may be an autoimmune disease - your own immune system trying to attack your body - so the idea is presumably to stop that action.

    If it makes you feel less anxious, cyclophosphamide is used to treat a lot of other things besides cancers, its even given to some people with rheumatoid arthritis for instance. And while there are always horror stories about the side effects associated with those drugs in practice most people either suffer no effects or just fairly mild ones. 

    Might be worth asking your GP or consultant more about why they want to use cyclophosphamide particularly to give yourself a better idea of what to do, but I wouldn't let the chemotherapy factor put me off if I was in your position. 

    Hope that helps a bit

    Morag 

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  • Posted

    Hi. I wasn't offered it so much as told about it but thankfully my consultant wanted to see how I got on with Prednisolone and hydroxychloroquine before bringing out the big guns. I tend to be sensitive to most medications so when I was started on 60mg of prednisolone I had a really bad reaction. However I have been alright since greatly reducing the drug amount.

    If your doctor is offering this as a first drug then I would strongly recommend that you hold back on trying it because it is a chemotherapy drug and therefore comes with the dreadful side effects. It should only be used as a last resort so don't be afraid to tell your doctor to pull back and start you on something less damaging.

    Are you newly diagnosed or have you had the disease for several years? Is your Sarcoidosis in one part of your body e.g. the lungs or are you like me and have it systemically (lots of places e. g. skin, joints, lungs etc)

    Have you been tried on steroids? Although all drugs carry side effects you need to take into consideration that the stronger drugs such as steroids and chemo drugs are a poison to the body. They are trying to stop your immune system from reacting because at the moment it is over reacting and trying to fight your body as it sees it as a disease to be dealt with. You need to think long and hard before you agree to chemotherapy drugs especially if you haven't been tried on anything else. Some doctors go over-board with treatment while others sit on the wire. Only you know how bad your sarcoid is making you feel but the last thing you need is to feel worse or have problems in years to come from the side effects. A lot of people don't realise that the medication they take today can have an impact in years to come so have a good think about it and write down all the questions you have about it and then go see the doctor who wants to prescribe chemo drugs to you. It's wrong to jump in without having the full story. As a nurse I used to spend ages informing patients about their treatment because I was aware that they tended to just put their faith in the doctor prescribing and never thought to ask about the possible down sides of some drugs and treatment. It's also important to know because you need to be able to recognise which are Sarcoidosis symptoms and which are drug side effects.

    Sorry for rambling on but I always worry about the lack of info given to patients. Anyway, good luck and let me know how you get on.

    Kind regards,

    June

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  • Posted

    Hi! Firstly, your forum name… I don't want to upset you but if you have the chronic version of sarcoidosis you might not get back to where you were. But all of us who have had the condition for years can tell you that you adjust, your life does go on, it just may have to change. But that doesn't have to be the end of anything - there are still things you will be able to do and enjoy.

    secondly, sarcoidosis is treated with a range of drugs some of which are used at higher doses as chemotherapy. I'm on methotrexate which is used to treat cancer as well as for autoimmune conditions such as rheumatoid arthritis. You have to have a blood test every six weeks as it can damage the liver, which also means little or no alcohol.sad

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  • Posted

    Sorry I should have said let 'us' know. I must have been typing at the same time as Morag and didn't see her post until I had posted mine. Both Morag and Di are on a forum I started well over a year ago regarding the lack of help and care for Sarcoidosis sufferers. There are lots of posts and more importantly lots and lots of support from these ladies and loads more. If you want lots of support and also find loads of answers then click here https://patient.info/forums/discuss/sarcoidosis-not-enough-care-and-attention-given-to-sufferers-37960?order=oldest+&page=0 it will take you to the page.

    You sound like a load of support would go down well as reading between the lines I can see how anxious you are. You know the old saying "a problem shared is a problem halved"? Well I think it is really true here because there is always someone at their computer who picks up on someone's distress post and answers it. I think it is like being in a small village where everyone knows everyone else and it's so easy to off load you troubles and feel beter for it.

    Don't worry if you don't want to join in that forum. That is absolutely no problem. I just wanted to let you know where all the Sarcoidosis sufferers hang out.

    Hope you feel better soon.

    Kindest regards,

    June

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  • Posted

    The life drawing post was an accident, but talking about things you can still do…
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  • Posted

    Thank you so much for all your responses.  I wasn't sure if I should reply individually or as a group.  So I do hope this is ok.  

    A little more about me I have been diagnosed with sarcoidosis for 9 months and in that time I have had steroids and have been taking methotrexate for 5 months.  I did have a week where I was my old self after taking the prednisolone which was amazing but very short lived.  It felt like sacoid came back with a vengeance not only in my lungs but now my skin and joints.  

    My work have now stopped paying me sick pay although for now I keep my job.  So I now find myself having to claim benefits which again is all new to me.  I have heard from the dwp (by text v strange) to say they will make a decision by 13th July.  Although I have not seen anyone this has all been done on the phone. Is this normal.  

    Finally they are starting the steroid infusion either Wednesday or Friday this week.  I asked all my questions from my doctor yesterday andhe seems confident this should beat this in to remission.  

    Can I just say thank you to all of you for your responses.  Although I have my family (whom I try to protect as much as possible) I have avoided friends as they don't understand 4 9 8 pitching wedge x2 5 7 6 sandwich 2 x putters 3 wood driver. Dunlop donnay procise inesisand this illness is so hard to explain.  Some days you look fine while others you can hardly walk. I get frustrated with you look well you must be feeling better!!

    One thing this had taught me is a much kinder approach to the silent illnesses like depression, ME etc.  

    so thank you all for your responses and support x

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    • Posted

      Just a quick response to your stuff with the DWP. Yes they do seem to do a lot more stuff by phone and by text these days. I have a friend who can't work because of a long-term chronic condition and its generally phone calls she receives - letters, especially worrying ones, always arrive at weekends as well she reckons when theres nobody in the offices to talk to about them. 

      Also remember that if you disagree with the decision they make you have the right to appeal. And judging by the statistics a lot of decisions against the individual are over turned at appeal! 

      While its a strong drug, hopefully the plan is that you only take cyclophosphamide for a short time to kick start everything then they'll take you off it again. 

      And yes, anytime you want to post here chances are there will be a response within a few hours. Apart from us all having sarcoidosis and being able to share how its affected us, treatment etc, June has umpteen years of nursing experience, I've studied pharmacology so I know a fair bit about the drugs, one of the ladies is very knowledgable about herbal medicines - between us we have quite a bit of information. I'm sure you have too

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    • Posted

      I was just thinking, it might be an idea to try and claim Disabled Living Allowance as your sick pay has run out. You have already had Sarcoidosis for longer than the 6 month waiting time to apply. It will be the new PIP you wil have to claim but even if they were to turn you down which I doubt they will, you haven't lost anything by applying.

      Remember to write about your absolute worst day when applying. Think about what you can't do rather than what you can. Think about your day from the time of getting out of bed until the time you retire for the night. You have already said how painful it is for you to get about so you need to tell them about this and all the help you get from your wife and family.

      Like you I have Sarcoid in my skin, joints, nerves and lungs. I also get

      tachycardia and ectopic beats (rapid heartbeat with missed beats). My resting heartbeat is 120 beats per minute normally! Little wonder I become exhausted so easily and am constantly falling asleep on the spot, which can be rather embarrassing. 

      When my heart goes like this I get a profound feeling of doom and feel like I am going to die. It's horrible but apparently this is exactly what patients feel like who have this.I have been told that the Sarcoidosis is not in my heart so this is an extra symptom that the doctors don't know the cause of. I am therefore so thankful that all the people who contribute to the Sarcoidosis forums are here and freely give of their support and understanding. It is my safety net while I wait for the feeling to pass.

      I've had Sarcoidosis for at least 3 years but was only diagnosed in March 2012 when I became very ill. A lot of the members have had their Sarcoidosis much longer than that which is probably why they are so ace at support and understanding. No matter which symptom you ask about I can almost guarantee that at least one member has had it too!

      I totally get how frustrated you are with people who think you are okay because you look okay. We were all talking about this about a week or so ago and all agreed how fed up we all were with people who just didn't get it. I think if my neighbour asks me one more time what Sarcoidosis is and what it does to me as I am looking so much better, I am going to poke her on the nose! We might as well be telling them we live a secret life as an alien for all the good it would do. That is why it is great here amongst fellow sufferers. The ones who are having a good day greatly help the ones who are struggling, by offering that all important life-line.

      As Morag has said, our little band of Sarcoidosis sufferers consists of so many knowledgable people. I am almost sure we could go from town to town in one of those 'information' buses, offering our help, support and findings on Sarcoidosis!

      One thing is for sure, it doesn't matter if you are a king or a pauper, anyone can get Sarcoidosis, it isn't choosy.

      How long were you on steroids and what dose were you on? I hope you don't mind me asking but I am trying to find out if one treatment stands out more than another where establishing a better quality of life is concerned.

      I just want to wish you the best of luck with your chemo drip. We will all be thinking about you and hope that it is all plain sailing.

      I hope you stay in touch with us all and let us know if you would recommend chemo or not so we can offer advice to other members who are perhaps uncertain as to whether to go ahead with this type of treatment.

      Sorry that my post is so long. Everyone is used to me and my soapbox ha ha!

      Kindest regards and hugs of support,

      June

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    • Posted

      I love the long responses.  I spend everyday at home alone waiting for people to come back from work this forum has now become my best friends.  

      I will of course keep the forum updated on the chemo once it starts, if it helps others make an informed decision I understand how important that is.  

      Thanks everyone for your kindness.  

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    • Posted

      You might very well regret that statement ha ha! I always end up writing long responses. One reason is I'm dyslexic and sometimes go all round the houses to make my point and the other is probably because I live along and I'm wheelchair bound so don't get to speak to anyone very often. I do have two cats but until the day they actually reply to my mumblings I will probably continue to write at length ha ha!

      Thank you very much for keeping the forum updated it really does mean a lot to everyone because there is so little about Sarcoidosis and even less about treatment. Also there are people who don't post anything in the forum but do read everything so hopefully the questions they would like to ask are being covered one way or another.

      I'm sure you must be feeling quite nervous and wish your treatment was all over already. I'm so glad we have filled a little space in your life just now and your contribution to the forum will be huge because we haven't had anyone who was receiving Chemotherapy at the present time, who could tell us how it feels and if they felt hugely better for having it or didn't feel any improvement.

      When I was first put on steroids I was given the full 60mg per day. After 2 weeks of this I had a complete psychotic break (one of the possible side effects). It was horrendous! I could hear voices, I believed I was living two lives in one. At one point I thought I was dead and they hadn't found my body! I can't explain the weird feelings I had but I am glad the dose was reduced, especially when I was waking up to find I had wheeled myself down the garden path in my wheelchair but had thought I was in my bed!!! 

      It turned out that I am sensitive to a lot of medication so now I have to be started on the smaller dosage of any drug and slowly increased to a higher one.

      I suppose I should be grateful really as the steroids did calm the Sarcoidosis down. However I've been told I will have to be on steroids for the rest of my life because every time they try to wean me off them the Sarcoid returns - bummer!

      Make sure your family understands that you might be feeling unwell from the chemo so that they aren't expecting an overnight miracle and you will be cured. Sadly there is no cure but there is remmission which can last for the rest of your life or you might have relapses. It is up to your body as to what will happen but I have my fingers crossed for you to go into life-long remmission.

      Get plenty of rest and drink plenty of water to flush your system (3 litres daily if you can manage it) If you are very breathless you can become quite dehydrated because breathlessness makes us breathe through our mouths which in turn makes us lose fluid that way. People forget this and think they can only get dehydrated by sweating or having sickness and diarrhoea but breathlessness can just as easily make you dehydrated very quickly. Also you need to drink plenty because you will have been given something that is poison to our system so you need to flush it through your poor kidneys and liver.

      See? I've written loads again - what a yap! ha ha! rolleyes

      Kindest regards,

      June

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    • Posted

      Hi

      My name is Kim and I am 51

      I was diagnosed with skin sarcoidosis six years ago it then went onto my lungs and last year I had heart failure twice and ended up in intensive care fir three weeks and was fitted with a permanent pacemaker as my heart rate was racing 160 and then goibg too slow I was then diagnosed with having cardiac sarcoid I take eight tablets a day including warfarin and steriods as I also had a bloid cot in my left arm and neck they wanted to put me on methodtrexate but I refused after doing my research on the drug and they now want to keep me in steriods for another two years which I do not want as ive been on steriods a year now and they dont actually help my condition one bit recently my specialists have said my sarcoidosis has become active again and I have one of the worst cases of the disease as now I am suffering with bad muscle and bone pain as well . I have struggled with this disease for over six years and last year they said had I not called the ambulance I would of died for sure ! Ive had little support from the soecialists and actually I fiund the heart specialist to be quite arrogant and rude ! Ive myself off steriods as my weight gain has been worrying me as t on two stones since taking steriodsI now accept this disease may kill me and want to live a good quality of life and not suffer anymore side affects from drugs they want to force on me

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  • Posted

    I meant to write they are starting the chemo infusion either tomorrow or Friday.  Sorry about the typo.  
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  • Posted

    Hello want ~

    I'm very tired right now but I did want to answer your question. Yes, I am currently being treated with methotrexate and plaqunil (sp).  I've had sarcoid since 2005.  I will write more later as I'm in desparate need of sleep.  Take care and you will get your life back!

    frustrated

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  • Posted

    Hi everyone 

    I thought I would up date you on my cyclophosphamide treatment.  I had my 1st dose 2 weeks ago and so far so good.  Like all medication there are side effects and I do know some seem quite drastic but I believe the chance of getting back to just a small part of my old life it will be worth it.  

    So the plan is providing my blood tests come back ok I will have the chemo every month for 6 months and then every three months for a year.  My specialist is very confident that this is the way forward for me. 

    Thank you all for your support and advice when I needed it most, and like many of us sometimes the despair of feeling so lonely in a world full of people who just don't understand this illness it's amazing to have friends in the forum who just get it.  

    I will keep you all updated with my progress in the hope it may help you all xxx   

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    • Posted

      Hi again. I'm glad to hear your treatment is finally off the ground.

      For those who are not familiar with this drug, it is predominantly a chemotherapy drug in the treatment of cancer and is also used to treat arthritis and auto-immune diseases..It is frightening for some patients who are told they are to be started on this kind of drug regime because people naturally identify chemotherapy as a cancer treatment only and therefore think that their doctor isn't telling them the full story They are usually too frighten of the answer to even ask, so I just wanted to clear that one up. Also it is not (or should not be) prescribed for people who have milder sarcoidosis, for obvious reasons. It is poison to the body in order to 'knock out' the immune system and if you have been prescribed it or other cytotoxic drugs please make sure you have been advised of all the side effects etc of the drug before taking it because you need to be able to distinguish between the drug reaction and the sarcoidosis symptoms. Plus you need to know what drugs like this can sometimes do to your body then you will be able to make an informed judgement as to whether to take it or not.

      With doctors prescribing this sort of treatment it does show how bad a disease Sarcoidosis is or can be. So, the next time friends are poo pooing your illness just direct them to the fact you are on cytotoxic drugs and see their expression change.

      I am so pleased to hear that you feel supported here. It is very sad that the support you really needed had to come from strangers and it proves my point that there is not enough awareness being made about this horrible disease and that a lot of people  haven't even heard of the disease before. I am a nurse of many years and even I had never heard of it before. I had nursed many people with a variety of immune diseases but not Sarcoidosis. If you google 'immune diseases' and then click on the Medline Plus website, you will find just about every auto-immune disorder except Sarcoidosis.This shows exactly what I am getting at. How can we hope to educate people about Sarcoidosis if it is constantly left off important lists lile this?

      I hope your treatment goes well, Wantmylifeback, and that you don't experience any side effects. As always there will be someone to talk to here whether you are feeling better or maybe having an off day. I think sarcoidosis causes our emotions to swing up and down a lot. I often catch myself crying for what seems to be no reason but of course we all feel things getting on top of us while trying to fight this disease. I totally get what you are saying when you say you feel so lonely in a world full of people. That is exactly the phrase I used just recently when asked to describe how I was feeling. Doctors tend to say we are depressed, which is partially true but in fact we are just pointing out how people don't recognised that we are fighting a chronic disease and really, really need their love and support. I think we should all ask our friends and families to read some if not all the posts across the sarcoidosis forums and maybe then they will get it!

      In the meantime, keep your chin up and keep fighting I'm sure your doctor's confidence is a really great sign that your sarcoid will go into remission. Be patient and keep positive.

      Big hugs,

      June x

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