Hi all, I have yet again been prescribed a new medication, (Above) this time for 'Bells Palsy' . 12 pills per day for 5 days, then 10,8,6,4,2 daily thereafter. In all a 10 day course.
I note that a side effect is being susceptible to infections as it weakens the' Immune System'
Given that CLL'ers are particularly vulnerable to 'Infections' I am wondering f I should just isolate for the 10 day course.
Any view, or personal experiences would be very much appreciated.
All the best, to all, Ron
What country are you from? My husband had Bells Palsy for almost 3 years and no meds were prescribed. We would have welcomed and thing…..he is now over the Nells Palsy and has been dealing with double vision since April 16. No treatment there either except was told to cover one eye each day and alternate eyes and this improves his vision but not much help with the balance issue.
We live in FL in the USA.
Best wishes to you!!! I do share your thoughts on diet, excerise and a positive attitude and I have had CLL for going on 34 years.
Panz 🙂👍💕🙏☘️🌴
Thanks Panz, I sympathise with your husband, it's not a pleasant affliction, and a little scary, as I have had a previous stroke and the symptoms I was getting alarmed me somewhat.
I was dong my morning exercise regime which involves eye exercises, and I noticed that I could not 'Wink' my left eye.
He said I was lucky to catch it as soon, as after three days, the medication does not work, It is not life threatening, but perhaps more annoying, I think.
I hope you are both well and making the most of your beautiful 'State'. If you have to get CLL, I cannot think of a better place, personally speaking.
All the very best. Ron
Hello, I'd say yes, isolate yourself. I was given prednisolone too. 12 X 5mg tablets/day for a week then 10 X 5mg for a week etc I'm now down to 2 X 5mg tablets/day. As I began this course, I quickly caught flu and this put me in hospital for 8 days and on oxygen and on antibiotics throughout. I was released but very quickly again caught pneumonia and was back in hospital for some weeks, always on oxygen and more antibiotics When everyone thought I was getting better I was allowed to go home again but within days was readmitted with sepsis. Really serious stuff and ended up in the critical intensive care unit at the Freeman hospital, again with a lot of oxygen and heavy duty antibiotics again. The medication and oxygen really battered me. My appetite disappeared and the constant oxygen really depleted my body. I aged years in that period. All in all, 4.5 months in hospital. What a nightmare. I'm out now and slowly but surely recovering. Appetite is back along with my taste buds. Rest assured, I won't be so complacent going forward in the future.
Take great care of yourself. 😌
Thanks for that 42828, you certainly have gone through a torturous time, not to say extremely worrying. From what you say it looks like you may be on a 'Slow Mend', and I do hope so.
I am in the UK but I suspect that you may be in the USA, where the standards of treatment can vary somewhat, I believe.
I will isolate until the course of tablets is finished. I am seeing a Respiratory Consultant re a very prolonged cough, Sputum sample shows negative, so I look forward to finding out if this is all connected in some way.
Can I ask you if you isolated as soon as you were diagnosed with 'Bells Palsy'. Also what condition were you in prior to being diagnosed with 'Bells. other than Isolate, I appear to be in the hands of the gods.
Did your CLL have any connection to all this, do you think?
I am starting treatment after 5 years W&W and hope to see my Haematology team soon, when I will update them with all that has been happening to me lately.
All the very best to you.
Ron
Hello again. I'm in the UK and treated at the Freeman Hospital, in Newcastle upon Tyne. A marvelous hospital with a top haematology team and unit. Here's wishing you a speedy recovery 🙏
Thanks 42828, It's always good to have a good team round you, in these situations, and it sounds like you do.
All the best Ron
I was put on a 7 day high dose of prednisone. First two days 50mg, then next five days 25mg. It certainly reduced my respiratory symptoms that I couldn’t seem to get rid of. After 4 days off the Prednisone I became very sick and tested positive to Influenza A. I’m still battling the respiratory symptoms. Sadly the burst of feeling well again on Prednisone was short lived. Not sure where to from here. Wishing you all the best. I’m in Australia by the way. 😊
Thanks Indie, that was helpful, I was sorry to hear of your complications, I hope you will be on the mend soon.
I did a 10 day course of Predison with no effect. I am having an MRI Thursday to see if their other any other underlying problems, as I have a history of tumours, and stroke in that region.
The problem I have at the moment is that I cannot effectively tape my eye shut, as it is open 24/7. My GP tried to do it for me, but my eyelid is so narrow, and always wet that he found it impossible.
No Medic has been able to give me an effective alternative so far, rather worrying, as I keep getting told that if I don't look after that eye, I may lose my sight. But I will continue searching for a solution.
All the very best, in Australia, where I am sure your summer is better than our Summer of Showers, over ere in the UK.
Ron
I too had Bells Palsy, the CLL was in a sort of remission after 6 months of Fludarabine. I felt numb on the right side of my face and my first thought was, a stroke. I tried playing the guitar and it went as good as ever so the hand was fine. Finally went to emerg and was diagnosed with Bells, Dr put me on, I suspect Prednisolone, don't really remember but she warned me that it was a strong steroid and I did not want to be on it for more than the ten days. The Bells symptoms went away completely over a few days and the steroids made me into a superman for much of the ten days. I was in my 50s and for that period I did not have an ache or pain anywhere and worked at a renovation in our yard like I was a 20 year old. Sort of comical now looking back but I realized after why/how folks could get hooked on the steroids. The Bells was a scare but in the end a minor one for me luckily. Take care.
Jerry
Thanks Biplane, yours was an encouraging story full of hope, and I hope I have similar results to you. I am looking forward to 'Feeling like a 20 year old' |(Not much chance at 76.)
I have just read another post, which describes a very bleak experience, but that is part of the value of this Forum, I think, it allows us to collect varied information , then make our judgements accordingly.
I wish you well for the future, and all the best. Ron
Zanubrutinib and water intake and sodium level
Diagnosed at 33 with cll and have discovered I've had it from early 20's
Half dose of Acalabrutinib
Gene editing could provide a cure for HIV (and perhaps a cure for other viruses and even blood cancers?)
GP'S - UK - WBC 
