PMR,Shingles etc.

Bones, joints and muscles
1

I was thinking about PMR and although I am very nearly stable on 10 mg Prednisolone it is a knife edge dose. I still have many side effects from 4 years use of the steroid. In some kind of order they are:-

Muscle wastage, fatigue, lassitude, thinning of skin, easy bruising, cuts which take an unusually long time to heal, glaucoma, dry eye, exacerbated and premature cataracts which necessitated operations on both eyes to replace the lenses, virtual permanent stiffness and loss of motion in neck, constant shoulder and back pain, balance problems and now a recent discovery which I believe to be bronchiectasis. The last manifested itself with a slight productive cough I have had for about a year, with a shortness of breath which is steadily getting worse. Initial exam by GP showed no ‘crackle’, X-ray was ‘normal’ blood ‘normal’, whatever that is. Have seen this GP who gave me a course of amoxicillin (5 days) which did nothing. Then just left me to get on with things, no follow up, nothing. Not sure what to do next. I can see any one of the other doctors at this particular practice and am thinking to see one of them soon; well at least I can try for an appointment, currently 2 weeks!

 Now the latest manifestation…..Shingles. Or to give it its proper title

Herpes Varicella-Zoster.  A particularly painful affliction caused by the chicken pox I must have had as a child. It has affected the left side of my scalp, my left forehead, eye and face; I am not a pretty sight! By the time I knew what it was it was too late for any anti viral medication so will just have to let it take its course. Existing on Paracetamol, Codeine, Neurontin and the occasional Tramadol. All of these analgesics are for a short time only, don’t want to get hooked. Managed to see a doctor reasonably quickly about my eye who sent me to the eye unit at my local hospital, ophthalmologist examined the eye and gave me the all clear, phew!

 On top of all this I have the daddy of all flares I put the cause of this down to the trauma of my new affliction. My immune system is compromised due to the daily use of 10mg. Prednisolone which I have increased to 15 mg. for a short time. It appears that any kind of trauma either emotional or physical will set off a flare.

 I wondered what causes a flare in other sufferers from PMR/GCA and do they do as I do and increase the dosage of steroid and try to rest? Or is there a magical cure I should know about?

 Long ramble I know but strangely feel better for writing it, apologies if you think I’m wasting your time, or a hypochondriac. (I’m not).

 All the best and a rapid relief from your ills

Jandap

 

2

You might be right on the flare up with any new trauma .. I'm fighting off (what i call my winter lungs --fill up with gunck) and a sinus infection AND the pain in my neck and shoulders has just reared it's ugly head ..

3

Yes, any kind of stress can lead to a flare-up - PMR loves stress and I can't think of getting anything more stressful than shingles!

I would do exactly as you have done, increase the Pred and rest, rest, rest.  And be careful about reducing - the other thing which can cause flares is by reducing too quickly.

I wish there was a magical cure - but I'm 15 years in and haven't found it yet.

4

Hi JandaPea,

so sorry you are going through all of this.

you have an amazingly stiff upper lip.

First, I have learned in the short time I've been involved, that you never waste anyone's time on this site. In fact , the opposite is true.

Everyone wants to help to ease the pain and frustration, as well as share in the joy of someone's good news.

Regarding your present issues, I can only speak to my experience with PMR, to present, and I am still in the early stages (almost 2 years)

i too, got shingleson left side of face and including eye, perhaps 6 months after diagnosis. That in itself, is pretty scary.

It's important to continue seeing the ophthalmologist, often, until you are completely out of the woods.

i was lucky enough to have caught it reasonably early, and utilized the med's to get through it faster. 

My experience with Flare ups, started last summer. At first I had no clue what was happening. It took almost 3 months and upping of the prednisone to feel 'Normal', again.

i went up, a mg at a time, till I felt comfortable. I didn't want to jump too high, because the process to come down, takes sooooooooo long.

i recently had another smaller flare up, and am now dealing with, a kidney problem, and the doc's have not yet found the source.  

So, to finally respond to your question, I believe from my experience, that flare ups are caused by  medical, physical, and mentally distressful occurrences, in our lives.

my physical activity is virtually at a standstill, at this time.

i was an athlete, all my life, and have been reduced to a couch potato, hopefully temporarily.

i forget I am not the person I was, and stupidly try to go back to doing and dealing with things, in the same way I did, prior to having this strange and dibillitating medical challenge.

i get a little better at dealing, with each flare up that comes along.

I hope I have given you a little peace of mind and that you will soon feel a lot better.

We can and will beat this.barb

 

5

I live in Northeastern Pa USA .. they dispense the steroids by prescription and only 30 days worth .. upping will mean I run out before I can refill .. I'm now on 20mg but script was for 15mg .. we used to be able to get 100 at a time .. no more .. how can you raise dosage without a new script .. doctor said he will write one for 20mg for 30 days in taper .. but that is what the last script was supposed to be and somehow it got changed to 15mg for 2 weeks and then drop to 10mg last 2 weeks ..

6

Can you find a doctor who lets you self-direct the rate of taper?  After all, you are the one with the PMR pain, you are the one who might get steroid withdrawal symptoms.  Not the doctor.

 

7

May be a long shot.....but regarding your cough please check out a recent topic on this forum called Silent Acid Reflux. Symptoms include a cough, throat clearing, etc.

8

Acid reflux good idea to consider. I  take Pantoprazole  20MG

9

Please, don't feel bad for telling us how things are evolving, because this is the right place to do so.

There are moments we feel tired of fighting, there is no end.

I feel the same way now and then.

I send you a word of strenght, courage and hope.

We take a day at a time and every day do the best we can. This afternoon was sunny a little cold , I stayed outside, breathing deeply.

Sending you a smile, a gentle hug.

We are not alone.xxxxx

10

Thank you all for your invaluable input; such a wealth of knowledge and good sense comes from this community. Especial thanks to iellen 32 for the cyber hug, just what I needed at this time. 'One day at a time'. Is such good advice.

All the best and a cessation from your ills.

JandaPea

11

I'm so sorry to hear about all of this. I've been thinking about the weakened immune system prednisone causes and wondered if the shingles vaccine is a wise choice for those of us who have this, or will it cause more problems? 

I also wanted to to ask if anyone has GI problems related to Prednisone? I've been on it since 10/15 and have had many issues with diarrhea! Sorry for being so blunt!

12

You are right, the shingles vaccine is a live injection as and such is contra-indicated for those of us on Pred.  The flu vaccine, on the other hand, is ok as it is a dead vaccine.

I've come across patients  having GI problems with Pred in the uncoated version.  There is an enteric coated version available in the UK, not sure if it is available where you are?  I have been on it all along, tried the uncoated ones for 6 days and couldn't take it, so back to the coated ones.

13

Bert, see the acid reflux post we've had lately in PMR group.

Yes, Pred caused me great distress in the poop department and even the magnesium to take with the calcium.  I backed off magnesium a bit, that helped some, but what helped the most with my poops is pill form refrigerated high active cell probiotics!!!!

I had those awful soft stools for so long on Pred until the probiotic.

As for acid reflux (silent AF) I just 13 days ago FINALLY got on Rayos Prednisone at night and my stomach has made a 180 turn for best!!!

Others on here mentioned putting Pred inside empty gel capsules.

see if probiotics help with your diarrhea.