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Everything is going wrong
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Everything is going wrong 01 Mar 2012 10:36 #1733067

  • hayley
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Hi

I was diagnosed in December after an emergency admission to hospital. I was put on Mestonin and was doing fairly well. My symptoms were a little up and down but manageable. My consultant put me on Azathioprine 3 weeks ago (to prevent the up and down) and now I am struggling. The MG is not too bad most of the time but I feel nauseous and have a constant headache. I ache all over and am now beginning to feel really depressed. Trying to get hold of the neurologist is impossible. My GP only works certain days too. I tried to go to work today but was sent home. My boss was nice enough but left me feeling worthless. I have been unable to stop crying which in turn is making my headache and nausea worse.

I am sure that I am not alone in my feelings but I just worry that things will get worse and the depression will ultimately make matters impossible.

How long does it generally take to feel 'normal' and get the drugs sorted?
Is there an alternative to Azathiprine?

Sorry to sound so miserable but there is no one else to turn to and I am worried.

Hayley

Re: Everything is going wrong 01 Mar 2012 11:16 #1733070

  • CarolO
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Hi Hayley,

I'm so sorry you feel so down.

Two things.

1) Can you email your neurologists secretary/PA and explain how you are feeling and ask if an emergency appointment can be arranged for you. If you google your neurologists name and hospital you may be able to find out who is secretary is and they usually show their email address. If not get in touch with your hospitals PALS team and ask them.

2) Though I do not take Aza (I take cellcept) it may be a short lived reaction to it whilst you get used to it and it starts to work. I remember my Neuro saying I would feel a lot worse before I felt any better - though this was mainly because of the high dose of steroids I was on.

But remember just to make sure and if you feel really bad and poorly you should go to A&E just to make sure all is ok - you must not take any risks.

Carol x
Last Edit: 01 Mar 2012 17:12 by CarolO. Reason: JUST TO RE ITERATE SHE MUST GET EXPERT HELP
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Re: Everything is going wrong 01 Mar 2012 12:10 #1733071

  • alice
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unfortunately medications have side-effects and sometimes those side-effects can be worse than the illness itself.

About 10% of patient taking Azathioprine develop flu-like symptoms that preclude the use of this medication for them.

I doubt that if you are having such symptoms after 3 weeks it will change later. It seems like instead of having tolerable ups and downs, you are now having downs and downs.

I think you need to get hold of your GP and neurologist as soon as possible.
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Re: Everything is going wrong 01 Mar 2012 13:30 #1733072

  • rick11
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Well from my own experiance of AZA i had this reaction and it did not get better until i was back only on PRED 10mg a day ,so i would rather have got off the AZA quickly than carry on just to see if the reaction may get better with time. I am no Dr though just a patient that was suffering from the side effects all the best RICK
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Re: Everything is going wrong 01 Mar 2012 15:05 #1733073

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Hi Hayley

Is there an alternative to Azathiprine?


Yes, there is, e.g. cellcept (as Carol mentioned) - and other immuno-suppressants such as methotrexate.

Before patients start on azathioprine it is advisable for them to do a TPMT blood test to make sure that they are not likely to find it toxic, see www.nelm.nhs.uk/en/NeLM-Area/Evidence/Dr...zathioprine-therapy/ - Not to frighten you but even those whose TPMT levels are okay may still have problems with aza, so best to endeavour to contact and consult with your neuro about your nausea etc.

Dusty
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Re: Everything is going wrong 04 Mar 2012 07:52 #1733117

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Hi Hayley,

Have you been able to contact your GP and /or neuro for advice? If not, try the MG nurse for your area (details on main site area), you need some medical assistance promptly.

Re: Everything is going wrong 04 Mar 2012 08:05 #1733119

  • hayley
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Thank you for all your kind words and advice.

I spoke to my GP who thinks I should persevere with the Azathioprine. They have written to my neuro but had no reply yet and I think they are waiting for her to make the decision.

I still feel nauseous, headache, achy and just want it to stop. I have an appointment to see GP on Wednesday.

I feel a nuisance when I keep saying I am ill. My MG nurse works part time but I will contact her next week.

Hayley

Re: Everything is going wrong 04 Mar 2012 08:08 #1733120

  • ragdoll
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I wonder how familiar your GP is with reactions to Aza? if she has seen that before then I would have more confidence in her evaluating your present condition, if not, then I would be concerned, I am not trying to alarm you, but did you discuss that, and have you had the test to see if you can tolerate it?

Sorry, I have seen the outcome of some-one having a severe reaction to Aza and it was extremely umpleasant and some of the effects irreversable, and whilst I am sure what you have said so far does not match the experience of the myasthenic who had this reaction to aza, it does put me more on alert to ensure that this is not overlooked.
Last Edit: 04 Mar 2012 08:10 by ragdoll.

Re: Everything is going wrong 04 Mar 2012 08:15 #1733121

  • hayley
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I have had blood tests since starting it and they have been normal so I guess they think everything is ok. Its so hard when there are so few medics who understand the condition. My GP seems to know about it but its hard to be certain.

I will call Lisa (MG nurse) tomorrow and see what she thinks. I don't want to be seen as awkward and a time waster . These thoughts are just adding to my general feeling of depression and self loathing.

Hayley

Re: Everything is going wrong 04 Mar 2012 08:33 #1733125

  • ragdoll
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Hayley, you have a serious medical condition (potentially life threatening), not a minor skin complaint! If anyone should be bothering their medical team it is you. I suspect you are having difficulty accepting this diagnosis at the moment?

Re: Everything is going wrong 04 Mar 2012 08:42 #1733126

  • hayley
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You are so right I am struggling with it all.

I do realise the seriousness of it all but I have been saying I feel *&^% since 2 days after I started the Azathioprine and keep being told its all normal. They are professional and should know so maybe I am making a fuss about nothing.

Struggling with work and being told I am a liability did not help either.
I work hard and put up with so much but this is just dragging me down.

Neuros are a rare breed in Hampshire and I am sure she is busy and will get to my case when she can

Re: Everything is going wrong 04 Mar 2012 08:52 #1733127

  • ragdoll
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Having a blood tests is not the same thing as the test to see if you can tolerate it! You should've had this, I didn't have this test (but this was in 2002ish) and was on Aza for about 3 years, after about a year, my tests showed that there was a problem and I had to reduce the level of Aza I took, it was ineffective for me and did nothing to alleviate my symptoms, because they kept ignoring my requests for an alternative, I eventually moved to another hospital and neuro.

They only know what they see, what they have read, and what you tell them, you have to learn to be more assertive, it is your health at stake here, your very way of life, and you will have to fight for it.
Last Edit: 04 Mar 2012 08:53 by ragdoll.
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Re: Everything is going wrong 04 Mar 2012 09:05 #1733128

  • levitas
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Hayley,
I suffered from Azathioprine poisoning and it is serious. It lead to a crisis and I was rushed into intensive care when I stopped breathing.
I see you live in Hampshire. Anywhere near Winchester?
It so happens that today is the day of the Regional Conference of the MGA at Sparsholt College, Wessex Conference Centre. I will be there but more importantly so will Lisa and a neurologist from Southampton. Dr A. P.....
It starts at 11:00am but you will be welcome whatever time you can get there.

Re: Everything is going wrong 04 Mar 2012 09:08 #1733129

  • levitas
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Hayley,
I suffered from Azathioprine poisoning and it is serious. It lead to a crisis and I was rushed into intensive care when I stopped breathing.
I see you live in Hampshire. Anywhere near Winchester?
It so happens that today is the day of the Regional Conference of the MGA at Sparsholt College, Wessex Conference Centre. I will be there but more importantly so will Lisa and a neurologist from Southampton. Dr A. P.....
It starts at 11:00am but you will be welcome whatever time you can get there.

If it is a reaction to Aza. then you will be told to stop it immediately. And if I were you I'd not take any more until you have seen a neurologist.

Re: Everything is going wrong 04 Mar 2012 09:17 #1733130

  • hayley
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Hi

That is scary

I am only in Basingstoke but to be honest I feel so awful that I really cant make it despite it being such an ideal opportunity. I am the only driver in my household so thats not great either.

My neuro is based between Southampton and Basingstoke and is Dr L K.

I know its the Aza causing my symptoms as they started a couple of days after I started taking them. The GP has told me to take 1 tablet a day and not build up to the 4 a day I need as 2 was too much. The GP thinks its the Aza too as there are too many coincidences for it to be 'bugs'.

So confussed and feel so poorly. My head is spinning.

Re: Everything is going wrong 04 Mar 2012 13:22 #1733131

Hello Hayley

Sorry to hear you are feeling so poorly.

I have no advice because I'm only on Mestinon .... but hope you get sorted quickly
xx Di
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Re: Everything is going wrong 04 Mar 2012 15:25 #1733136

  • jantoo
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Hi Sweetheart,

I have been on azathioprine for almost 2 years, regards the m.g. I can't notice any difference, I felt a bit sick at first, I take 5 a day and of course good ole mestinon.

I have seen no change from being on aza. apart from the interminable infections, mostly chest, aparantly it can take ages to 'kick in'

I had a thymectomy because of thymoma and after about 5 weeks deveoped pneumonia and ended up in hospital for fortnight, and they stopped the Aza.
It is a potent drug and quite frankly I am sick of taking it because of all the flipping blood tests one has to have.
But at least I know that a message to consultants secretary will involve a response from him.

I have just had ivig for second time, different drug this time called Octagam, feel so much better and even feel like cooking! trouble is I think it went in too quickly because I had a mottling on arms and lower legs very similar to when you stand too close to an open fire, still there a bit but fading.
Hope you manage to contact someone who can help you a.s.a.p.

jantoo

Re: Everything is going wrong 04 Mar 2012 17:36 #1733137

  • Green
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Hi Hayley, only reading this thread now. I startd azathioprine a few weeks ago and was doing okay on 25mg but 10 days after they upped my dose to 50mg I started throwing up every day after taking it, they split my dose to 25mg twice a day (so still 50mg per day ) and i was okay again.but on Tuesday just gone I got a call from the hosp saying to stop taking the aza immediately as it was effecting my liver in some way. So I have come off it. Had another blood test on Friday and am going in to the hosp to see the Nero about another drug tmrw, think I might be starting mycophenolate (cellcept). I had weekly blood tests to make sure it was not effecting my white blood cells too badly,

I had read that some people will have bad side effects from aza but these settle down after a few weeks, so I was prepared to just get through the bad patch but obviously some people (like me and maybe you) can't take it.

I suppose I don't have any advice for you but maybe knowing that someone else is going through something similar helps a bit. Hopefully the new drug I get will work for me and things will work out for you too,

Re: Everything is going wrong 04 Mar 2012 17:41 #1733138

  • levitas
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Hello again Haley,
Just got back from Sparsholt. Not a bad turnout, about 60.
Dr. P gave a very informative talk including a review of all treatments for MG, LEMS and CMS.
He confirmed Azathioprine can take 18 months or more to take effect. Pred is quicker acting but, he said, the dose should not be altered frequently as it takes weeks for the body to adapt to any change. So he waits a month between any alterations.
Lisa described her work and how she can help people cope with MG and the "system" - getting to see your Neuro. etc.

Sorry you couldn't make it to Sparsholt - but it was rather short notice!
We do have a meeting planned in Basingstoke on 21st. April at the Fur & Feathers pub at Herriard (down the Alton Road). Perhaps you will be feeling much better by then.
It's just an informal meeting for a chat and a coffee or whatever, from when the pub opens at 12:00 noon. Stay for lunch if you wish.

Re: Everything is going wrong 05 Mar 2012 08:19 #1733157

  • hayley
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Thinking of you today 'Green' and hoping the neuro gets your drugs sorted out and that you feel much better soon.

Thank you 'Levitas'. I am going to email Lisa now. Its easier for me to write as I wont get so emotional and will be more honest. I wont worry that I am wasting so much of her time. I have put the 21st April in my diary and health allowing i will be at the meeting

Re: Everything is going wrong 07 Mar 2012 06:10 #1733185

  • rogiet
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hi
just to say I emailed my nuro on the 19th feb with worries that i was getting worse and asked for appointment. none came so i rang his secretary and she said 'oh he looks at his emails when he gets time and he does not phone either so no need to ask that question' well i was shacked and as my worries got worse i went to see my own doctor who really has no idea about mg but said he would email my nuro with concern, guess what still no reply or appointment to see him. I have both eyes that wish to close also jaw not working as it should so am not eating much and my speach goes most the time so much for my nuro saying 'feel free to email me with any worries' so now i am going through PALS as i think the service and care i'm getting SUCKS

Re: Everything is going wrong 07 Mar 2012 09:22 #1733188

Sorry to hear that Rogie. GP's and Neuro's do seem to be different around the country. Mind you saying that I rang mine and still have not had an answer, but I see her on the 21st March, so I guess I can wait till then now. See GP in 1/2 hour.

Re: Everything is going wrong 07 Mar 2012 10:53 #1733189

  • hayley
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Hi Rogie

I am so sorry you are also having trouble with contacting your neuro. It very scary and having the added speech problems does not help.

Lets hope that PALS can get things moving for you. Are you in one of the areas which has an MG nurse? If so it may be worth contacting them.

My GP is being brilliant and is chasing my neuro for me today. Been put on more meds today to try and ease my cough. Thank goodness for medical exemption or I would be struggling with the costs of the prescriptions.

Fingers crossed that you get the help you need really soon. Hx

Re: Everything is going wrong 07 Mar 2012 11:22 #1733190

  • levitas
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hayley wrote:
Hi Rogie

Are you in one of the areas which has an MG nurse? If so it may be worth contacting them.

Hx


Just to clarify - The MG Specialist Nurses cover ALL the UK and Ireland, not just the hospital where they are based.

Re: Everything is going wrong 07 Mar 2012 13:31 #1733192

  • hayley
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Thanks Levitas. I didnt realise that. I thought it was more a postcode lottery and if you were lucky you had one.

I am VERY lucky as mine has worked hard for me this morning and has spoken to my neuro

I am stopping the Aza and starting some antibiotics which wont upset the MG so hopefully things will start to improve.

I hope Rogie and Green both get some help soon. Thinking of you both.

Re: Everything is going wrong 07 Mar 2012 15:48 #1733193

  • Green
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Thanks for thinking of me Hayley!

Well met my neurology consultant on monday evening, have come off azathioprine altogether and won't be going back on it, it seems to have really effected my liver, I had levels of enzymes (I think it was enzymes anyway) in my liver that matched levels of a very heavy drinker cause of the aza! Haven't had a drink since October with all this MG business!

So have more blood tests next week and an ultrasound of my liver to make sure everything is okay then as suspected I will be starting in cellcept in two weeks.

People seem to be so unlucky with doctors etc, it really is key to get a good team around you, neurologist,gp and the mg nurse, I have been very lucky with all three so far and the only thing holding me back is my own body! Once you get settled with people who understand you and mg you start feeling better about everything!

Re: Everything is going wrong 07 Mar 2012 19:21 #1733195

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I am really pleased for you Green.

Its obviously been a worrying time but now there is a light at the end of that tunnel (only a tiny one right now but its better than nothing).

I am sure Aza is a brilliant drug its just a shame it makes a few so poorly when they are already so low. I hope the cellcept has a better reaction.

I still need to wait for the next step but being off the Aza should help initially.

Takle care
Hx

Re: Everything is going wrong 08 Mar 2012 11:00 #1733198

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Dear Hayley,

I just read your story. I usually keep up better than I have, but as you may have read - I've been struggling with MG since I was diagnosed in January. This week I had to leave Bahrain where I lived to return to the US after 12 years because I couldn't get the care I needed there.

At the moment I am at Mayo Clinic in Minnesota and awaiting a March 12th series of consultations. I know one option will be to get on a non-steroidal immuno-suppresant with Aza or Cellcept being 2 choices, so I am following with interest your struggles, aware they may be mine next week!

Yuck, this MG is bad news!

I want you to know I am thinking of you, and hope they get you sorted quickly.

Warmly,
Linda

Re: Everything is going wrong 08 Mar 2012 12:40 #1733199

  • Bobbyjo
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Hi all...just to say I have just I started Methotrexate yesterday, which is another immune suppressant for MG and also other conditions, which I also have.

I had already taken Azathioprine and Cellcept, which I had to stop because it wasn't really doing the job and also the Liver blood tests were high.

I am still on prednisolone and desperate to find something other than this that will help so that I can reduce the steroids. I have been on them for over 2 years now and am beginning to suffer the consequences of this.

A lot of the medications are trial and error and what suits one person, may not suit another, so it is a matter of trying to hang on in there and working with the Doctors, making sure you relay any possible side affects etc.

I haven't seen messages from so many taking Methotrexate and so would be interested in knowing what I might be heading for, along with it maybe helping others that might be going through the list of Immune Suppressants available for this condition.

Thanks for bringing the question up

Andrea

Re: Everything is going wrong 08 Mar 2012 14:05 #1733200

  • Green
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Andrea,

Methotrexate is next on my list if cellcept doesn't work so I back your request for people's experiences with it. . . Although I hope the cellcept works and I dont have to go further down "the list"!

Steroids for two years, that's awful, I've been on them just over two months and I am dying to get off them, can't look at my huge face anymore, they have changed me completely although I am grateful they allow me to talk and eat I suppose!
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