I have not posted for awhile but have tried to continue reading on the site when possible. This is due to the amount of things recently that have affected me and just really reduced my motivation for some things.
My last post I think was when I reduced to I think 5 mg Prednisolone at the end of December. I have been reducing slowly and now just on alternate days of 4 and 3 mg. apart from the initial withdrawal aches, not too bad. My concern is ongoing stress.
Apart from working (3 long days), there has been family ill health and one of my good friends died a few weeks ago, also my son in law’s father also died in Frebruary. I counted approximately 5 -6 things in succession. Felt a bit low but got on with things. No motivation for exercise (unusual for me as I was a gym person before diagnosis).
It is today looking like my granddaughter may have chicken pox and I have been looking after her. I was told previously to contact GP if this happens but wondered if it is still an emergency as I am only on low dose pred. I think I have had CP as a teenager. Also had some slight left sided dizziness, spacey feeling but think my ear maybe blocked so putting oil in it.
Sorry about the rambling. My main concern is about chicken pox but does other people feel emotional and demotivated with events. I am usually a very resilient person.
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Mitziecat
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Hi Mitziecat, It is good to hear from you again. I am sorry to hear that you are going through one of those periods in life when things hit you blow after blow. I am sorry for the loss of people close to you and the ripple effect this has on everything in your life. I am not surprised that you feel de- motivated - a healthy reaction I would say.
As for Chicken Pox. When my grandson had it my G P gave me a there and then test for immunity. I was immune in spite of never having had the disease. So I carried on looking after Theo, giving him oatmeal baths and dabbing his spots with Chamomile ( no scars). The danger for us is that the same virus can give us Shingles I think and you wouldn’t wish that on anyone. If you search Chicken Pox or Shingles you will see previous posts, this topic comes up regularly. I think you are right in thinking that the virus is less likely to go haywire when you’re on a tiny dose of Pred. It is the contents of the blisters that carry the virus I think.
You seem to be doing well managing your illness and taper. Be very kind to yourself. Have a nice peaceful Easter. Maybe stick with us for a bit until you feel stronger.
You can only develop shingles if you have had CP in the past - you can't "catch" shingles. The virus becomes dormant in the nerve endings after CP and remain there. Something may trigger them to wake up but that can happen anyway. Theoretically, if someone has shingles and you are in contact with the fluid in the blister you COULD catch and develop CP. It is next to impossible though...
Thank you so much for your support as it can be hard at times and people around you do not understand that although you keep smiling and going, underneath it can be miserable. Thank you to all the supporters on this site. I am planning a very quiet Easter.
Wouldn’t do any harm to run the CP scenario past your GP - unfortunately that now means next Tuesday - just to make sure.
Sorry to hear about all the stress you’ve had recently, if it were me I think I’d put my tapering on hold for a little while until things settle down and you begin to feel a bit more “you”. No harm at low levels. Emotion and de motivation may be connected to adrenal glands not up and running properly yet, so again another reason to take your reductions slowly. And work as well - all not good for PMR
Thank you for your support and reply DL. I have contacted the 111 service and waiting for a doctor to call me back. Hopefully it will be a watch for symptoms scenario. I read that you can have an antiviral treatment if symptoms occur and it is given within 48 hours.
I did wonder about my adrenal glands & will see how I progress no major problems with tapering at the moment. Definitely taking it at a slow pace and will not go any lower until this issue is over. Only reduced yesterday but before the CP scare. Any symptoms and I will return to 4 mg
Would love to retire but still about 3 years to go. Plus side is I have reduced from full time. However, keeping an open mind and see how the health progresses.
Hi DL. Just spoke with the doctor. As I thought, just keep an eye for symptoms. Any signs of a temperature, spots or feeling unwell I have to call back & will be seen for a check up if my GP surgery is closed.
Feel a bit better about it and thanks for all the advice, support & encouragement from everyone.
If you had CP as a child there is little to worry about - the warnings are aimed at people who have not had CP in the past or who haven't had the vaccine and who could catch it. CP is nasty for any adult, for anyone with a compromised immune system it would be even worse. But you are now on a dose that is well below what your body is making as cortisol anyway.
IF you were to develop any symptoms of CP or shingles then you will need an emergency appointment with the GP to get antiviral medication. There is no point starting them now, they do not have a prophylactic effect, just once the symptoms appear when they should shorten the duration and reduce the severity of the symptoms.
And like DL - under all those circumstances I would definitely consider stopping the reduction for a bit. And would take a tiny bit more if it made me feel better.
Good advice and wish I could definitely remember CP as a child. Nearly sure that I had it as many of us did. Both my children had it as young children and I never caught it.
Will stop the taper until I feel better. Have a lovely Easter.
My comment is focused on the stressors you have in your life right now. They are huge!!
Sometimes we are like the unwitting frog who hops into the pot of water on the stove, and sits in the water as it continues to get hotter and hotter... the little stressors (and big ones) keep turning up the heat till the poor frog just boils to death.
We cant stop the unraveling of life, and events like death, etc., hit us as stress, ...which is toxic to a PMR patient.
What to do???? Gazillion dollar question, there!
While you deal with the cp issue, take some time to care for yourself. Certainly consider taking a short break from tapering, till things settle down.
Such is my little offering to you, during this challenging time...my condolences regarding the loss of your friends. 🙏🏽
Thank you for your kind words Jerri. Stress does follow you around when you don’t need it. Keep telling myself that there are others out there with worst ailments and stress than me. However, a teeny weeny break from it would be nice 😀. Will heed the advice about TLC for myself and hold on the tapering. Have alovely Easter.
Hi mitzicat. I'm usually positive and resilient but PMR has left me finding life can be a bit too challenging sometimes! Stick with it! Summer is round the corner and some sunshine and sunny days will hopefully lift the spirits. I work with young children and their families and every time we have chickenpox "in the house" I get shingles down my arm. It would seem I am just particularly unlucky as in my circle seem to be the only one affected. Hope you swerve this nasty! Happy Easter!
Have you had the shingles shot? I was just advised by pharmacist that I need the New one. .. I have had the one available for a few years.. and now they are saying another one. I have faith in them as I see friends getting shingles now and again..and i have not. Knock on wood. What do others think about the shingles shot. Happy Easter and Happy Passover to all who celebrate these days.
And I am to have a vaccine to PREVENT shingles - that can GIVE me shingles?
Now I know these are about the original one - my usual attitude is that I will try the new stuff after about 5 years of general use. Because that is when they find the REAL rates of adverse effects - and often that is when they find the first signs of things that didn't show up at all in the clinical trials in relatively small numbers of patients and for limited periods of time.
wise advice. I know the old shot was live virus.. but this new one is not. That is the only reason i think it won't give you shingles. But you are right. it is new. With PMR I don't want to be a guinea pig. .. will rethink. Anyway doing nothing now as about to leave again for Sweden and the long long flight and stress etc doesn't need an additive! thanks!
Hi Yogabonnie. No I have not had a shingles shot. I didn’t think it was offered under the age of 70 or with a condition like pmr and steroid treatment. Think I will give it a miss & hope I dodge that bullet. Feel as though enough medication is entering my body at the moment. Happy Easter to you also.
Yes Mitzicat,it certainly does have an effect on PMR,when stressful things happen in your life,l am supposed to lower my preds from 3 down to 2mgs but have not been able to as my husband suffered a major heart attack last November and after a month in hospital sadly passed away.l was feeling really good before this happened but the stress of it all made things a lot worse regarding thePMR.l do not know if you are safe yet being around chicken pox but hope you will be OK and that life becomes a lot brighter for you now.
Hi Grants148. So sorry to hear about the loss of your husband. That must have been so difficult for you and probably still is. I don’t know if I am safe yet but currently no symptoms 4 days from when spots appeared and a week prior to that.
I am sure things will brighten up as I am usually a resilient person. I hope things are better for you also and you will be able to continue your tapering.
Thankyou Mitziecat,it has been a very sad time but l am feeling much better and getting more used to being on my own although l miss my husband very much ,l hope you will be OK and avoid catching chicken pox xx
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