Update: I just thought that now I have been... - AF Association

AF Association
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I just thought that now I have been on immune suppressant treatment for 2 months now I would give those who know my ups and downs an update. 6 weeks into the treatment I started to notice a definite improvement in my body strength and energy levels, it was very gradual. Then about 2 weeks ago my eyesight started to improve. Double vision went to just blurry but I could manage a few hours a day without patching. Then I got a sniffle which completely floored me again, couldn't move out of bed for a week, back came all the symptoms and my hopes of driving again were dashed.

I slowly recovered and today was the first day I have been able to focus for any length of time and do more than a few seconds at screen work. It's late now and my eyes are tired and the double vision is starting to return BUT it is the first day I have managed ALL day without a patch! So hope is high again.

What I have learned is that I can't take anything for granted anymore, any stress, I flare, if I don't pace myself very carefully, I flare, if I catch the slightest sniffle I flare, if I don't take my meds exactly every 3 hours I fall down, literally some days! But today was a good day! Yeah!!

Oh and forgot, if I don't get 8 hours sleep I flare so goodnight, and sleep well!

17 Replies

oh my, AF sounds easy in comparison. you are very courageous! wishing you no flares!

Take care

Good to hear this, CDreamer. It sounds as if you are getting to grips with this unwelcome problem and the medication is taking effect. May you continue to improve!


Hang in there. As Iris says AF sounds easy but then you know of my battle, hopefully won!

Rest well


Best of luck CDreamer, take things carefully and try not to overdo it - so hard but worth it.

It sounds very much like you are on the up, slowly improving and beginning to understand your limits. Hope you continue to improve. Best wishes.


It is a real roller coaster ride, hope and disappointment..........but the trend seems to be upward.

In some ways it is easier than AF in that although the fatigue is the worst you ever experience with AF and at it's worst muscles cannot work, at least there is no thumping in the chest and my BP doesn't drop to the floor so there is no syncope and most of the time I am not generally breathless all the time. It is just BORING because resting mean resting my eyes. I have all these ideas for projects and things to catch up on but I just am so limited as to what I can do, what I cannot do and to limit myself as to what I can commit to so I don't overdo things.

I don't think courage comes into it, you just have to get on with it because you don't have a choice. I have a worldview though that taps into the ideas that illness can also teach us something, I guess that would be patience! I always wanted everything yesterday!

Thanks all for your good wishes, glad you are through your worst Bob, as you know hubby also came through and +3 years is down to annual checks with 6 monthly PSI tests, all coming back less than 1 whereas at highest they were 38.

So glad this forum exists, you guys are the best!

cbsrbpm in reply to CDreamer

So glad you are getting there, just be patient and recognise when you need to stop. As I said before, my husband has MG too but is now doing so well and is off the mycophenolate and taking pyridostigmine. He was lucky as the eyesight returned to normal quite quickly, but tires easily although he is back playing squash at 73 so not so bad. He also had his prostate removed about 8 years ago and now has just yearly checks. Hope you continue on the up.

all the best


CDreamer in reply to cbsrbpm

Thanks Brenda, I remember you saying that your husband recovered when I was just diagnosed and still reeling from the shock and the impact of just how restrictive it was going to be and how scary a crisis could be and reading so many posts on ten Mg sites when it seemed everyone went through a crisis and ended up intubated.

It just seemed to good to be true then but as with everything, the initial few months are always the worst.

I have always hung onto your post because it really was the only positive one I read at that time, so many thanks, it really did help.

Really glad he off the Mycrophenolate, I have been lucky that I haven't needed to go on steroids and I am managing to reduce the Pyridstigomine down to 60mg x4 the last few days which seems to indicate the treatment is working. All the best CD


Glad you're on an upward trend CD, keep posting :-) .


Great to hear. You and others who are learning to triumph over or live with conditions much worse than A.F.,are inspirational to us all. Thank you.x


What I hate about these illness's, are after time, symptoms become the norm because you can't remember anything else. When the stroke nurse came on her last home visit, she said you need to get a hobby and all I could think is how. CDreamer nice to hear from you. I am still battling for diagnosis (muscle biopsy soon) and the dwp for PIP (medical early December ) I am beginning to feel these are my hobbies. Onwards and upwards.

CDreamer in reply to Hidden

Doesn't it take so much of your energy and time! I have yet Another eye-test next week, this time for the DVLA which evidently is done by Specsavers. Now as most doctors can't get there head around Mg what hope Specsavers? Any test they do will be different to the one they do in a few hours. I am going for it though and medicating up and picked a time which I know will give me the best chance of passing as I SO need to be Independant again.

I do hope the biopsy goes well, I believe they can be uncomfortable. And very, very best wishes for your PIP, hope you are NOT on for that one. That is the most difficult for me, not knowing how well or not I may be as it change so quickly. I am debating with myself whether or not to apply for a blue disabled badge as I can look perfectly good and very fit when I park but I know that a lot of the time, unless it is very short distance I may not be able to walk back.

Good to hear about you, keep in touch Poppyseed.

Should read on form, not on for, I hope you know what I mean.

I'm really sorry you have to go through this and I hope that you find ways to live well with your circumstances. You are a hugely positive contributor to this forum, writing with wisdom, insight, an open mind and compassion. I always appreciate your posts, so encouraging and also empowering to people, though sorry when it is to report your struggles.

Take care, I love hearing from you.


jennydog in reply to HappyJo

I agree totally with Jo. Your posts are a great source of support.

And whether you agree or not your courage shines through!!

Very best wishes.

CDreamer in reply to jennydog

How kind you both are, thank you so much it is very nice to be appreciated.

So sorry lifes such a struggle for you and I really can appreciate how hard

it is for you to keep going when everything seems against you. I really do

hope that you now have some hope that things will get better before too

long. Take care my thoughts are with you.


CDreamer in reply to shirlygirly

I have Shirley, this is good news posting! As Poppyseed says it becomes your norm and we all have our struggles don't we, you too have been through the mill and thank you for your thoughts.

This is the great thing about this forum isn't it, people who have suffered ill health, supporting each other. Whatever I have lost in fitness I have certainly gained in tolerance and understanding for other people's struggles, ooh and patience. It's not until you lose something you really value what you had and then you find all sorts of things you didn't know you had!


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