I was dx'd wuth PNR about 2 months ago. I was started on high dose Prednisone and almost immediately started having problems with my NIDDM, feeling anxious, shakey, increase heart rate etc. Within a week I developed shingles. My shingles were of the "Zoster sine herpete" kind. I was immediately put on antivirals and continued to take Norco 19/325mg for pain and Xanax 0.5mg q 8hrs fr anxiety. Well things continued to get worse and Gabapentin 300kmg tid was added. It helped for a couple of days. Today I an experiencening tingling, numbness of my hands, increased anxiety and I am very photo sensitive. My visions was justed checked. All good there. I cannot sleep but a couple of hours a night. I have put my self on "house arrest" as I keep falling asleep at the drop of a hat. I feel like i am going to scream! Can anyone help me?????
So sorry bedilia. Had none of your symptoms but do feel for you. I hope someone else can help.
I had the Shingles before the PMR and had been suffering Post Herpetic Neuralgia heavy duty for some time, Pain like I was were being ripped apart, but, then along comes PMR. That put PHN in perspective.
At the time I was taking 100mg Tramadol up to 4 times a day and 10mg Amitriptyline ( it works well for nerve pain as well as an antidepressant) at night and this managed the pain to some extent.
I then went on to high doses of Prednislone and on the doctors advice kept up the Tramadol and Amitriptyline with little adverse effect. At first I felt a bit anxious and a bit hyperactive when it came bedtime but things soon sorted themselves out. I am at the point now of living a fairly normal life, except if after lunch I relax for too long I fall asleep and I mean proper sleep not cat napping. I find it best to do something other than sit and read, like go for an afternoon constitutional.
Anyway, now my Preds are at a 10mg level and falling, my Tramadol is on an as and when needed basis and averages about 150mg per day in 1 or 2 takings and the Amitriptyline is the same low dose. Vitimin B12 is good for nerve fibre maintenance.
Anyway, contrary to what some folk told me I have had no siezures or other nasties, and as my rambling writing proves, I'm still here to tell the tale.
Good luck with it and try not to loose heart, it is manageable.
Steve.
TY Marjorie. Your support means so much. God Bless you!
Christine
Steve, TY so much for your reply! Your story sounds like mine, except I had the PMR first. I slept for several hours yesterday and when I awoke I just started praying for God's help. He answered my prayers, yet again. I was able to calm myself down and fixed a lovely meal for myself and went to bed around 8pm. Last night I did take my Trazadone for sleep and I found that helped so much. I slept 7 hours and awoke only once, briefly. First time in months that has happened! This morning I feel like I have turned yet another corner on the road to recovery.
My Prednisone dose is 2mg now, down from 40mg! I will heed your recommendation and purchase some Vit B12. I do take vits now and also QNol which helps your immune system.
I see my PMD on Thursday and will speak to him about the Tramadol. I don't like taking the Norco as it seems to add to my already sleepy state. But for now I will continue to take it, as I continue to have PHN.
TY you again for your reply! God Bless you!
Christine
Bedila, Im sorry to read what a horrid time you've been having. I, too, developed shingles whilst on steroids for PMR and GCA but got hold of the antiviral medication promptly and had a fairly smooth ride to recovery. I was left with the tingling/nerve pain for many months but nothing I couldn't cope with.
It sounds as though you've experienced a bad reaction to the steroids, but Heaven knows why your Dr put you on such a high dose as 40mgs which is normally reserved for those diagnosed with GCA in order to get the inflammation down to protect our eyesight. The usual starting dose for 'just' PMR is 15mg, sometimes 20mg for those with excess weight.
However, it is sounding like excellent news if you have managed to reduce your steroids from 40mgs right down to 2mg in just 2 months! Without wishing to put a dampener on things, PMR usually takes anything from 1 year (if you're very lucky) to 3 years (and more for many of us) to run its course, and it is found that those who reduce the steroids too quickly are at greater risk of flares/return of the condition.
I do hope you continue to feel better.
Just to add to MrsO's comments - why on earthe were you put on 40mg? That is far too high for PMR unless there are any visual symptoms suggesting GCA. And are you sure you are on 2mg? Not 20mg after 2 months? Because if you have all these problems like not sleeping at 2mg there is possibly something else going on.
I have a reputation for being cruelly down to earth - if it really was PMR at the outset and you are down to 2mg after 2 months then you may find the symptoms returning at such a low dose. PMR that burns out after such a short time is very unusual or is a sort that tends to recur. If it does - you shouldn't need such a high dose.
But I'd suspect that it could have been something else that caused the symptoms - there are multiple causes of the stiffness and pain that is described as PMR. It could have been the same trigger as led to the resurgence of the herpes zoster virus as shingles.
I do hope it all goes away very soon - especially the shingles as that pain is nasty.
Mrs O, Ty for your reply. My PMD only had me on 40mg for 5 days, then I went to 30, then 20 etc. I have a history of long term steriod use for multiple problems. He started the Pred with much releuctance on both our parts. I was in utter agony and we both felt Pred was the only solution. He is an excellent physician and has been my PMD for 12+ years. I have Pulmonary Hypertension that is caused by multiple PE's. I have that under control now thanks to a new drug called Adempas.
We both have suspected I had some kind of auto immune disease for quite a long time. All my tests came back negative until about 2 months ago. MY CRP and ESR were through the roof. That is when he and I made the dx of PMR. I am a retired RN of 42+ years and my PMD not only have a doctor pt relationship but, we used to work together. We both respect each others opinions and he listens to me and does not put me on ANY med w/o my agreement to the POC.
I know that I have a long road ahead of me, PMR is not something you can take a pill for and it will go away. Yesterday I was in full crisis mode and needed some help and support. I live alone and even though i have neighbors and friendswho try to help, I felt utterly and completely alone and desparate for help yesterday. I thank God that he sent me to this site.
Once again I thank you for your reply.
Christine
TY Eileen. See my reple to Mrs O.
Christine
I don't like to put the dampers on things especialy as you seem to have overcome your initial panic. Mrs. O pointed out that PMR lasts from one to three years IF you are lucky and can last much longer if you are unlucky. PHN can last even longer, I've suffered from it for NINE years. Although it's not as bad now (generally) as it was at first, sometimes it flares into a full blown attack.
Also, shingles isn't always a one off offender, I've had full blown shingles at least 3 times. After umpteen blood tests looking for unmentionable things (like HIV) I was given the all clear on that score and told I had an autoimmune problem, hence PMR.
Having said all that I must point out that I am in the very small minority of sufferers and most people get over shingles with little or no after effects
Steve, I am not looking through "rose colored glasses" re my bout with shingles. In fact this is the 3rd time they have graced me with there presence. I know I am only at the beginning of my recovery and may never fully recover. I'm ok with that. I just feel so relieved that the "crisis" mode seems to have passed. Today for the first time in almost 2 weeks I was able to attend Mass and go to breakfast with my friends. I didn't drive...someone else picked me up and brought me home. In fact I was able to have Kathy take me to the market and could do my grocery shopping.
As I said in my earlier post, I am a retired RN with 42+ years of experience, mostly in critical care. I am blessed with having above average intellegence and pain management was one of my specialites. I thank you for your words of encouragement and plain truth.
Christine
And a bit more plain truth: As a retired RN you should be aware that you can infect someone when you have shingles - they can develop chickenpox. It can be fatal for someone who is immunocompromised and cause damage to the foetus in a pregnant woman. By no means everyone has been vaccinated. Being in contact with others in public is a bit irresponsible.
I believe that shingles is infectious when the rash/blisters are around and ceases when they go.
Zoster sine Herpete or Herpies san Zoster or what ever you call it is shingles without the rash so presumably is non infectious.
There are an awful lot of common ailments and things that people do that can have adverse effects on unborn babies and their mothers, the old,and the infirm, ...you name them, they'll suffer. Whilst we should be as careful as possible we can't realisticaly hide away from the public any more than we can put the public in a glass bubble.
Perhaps a bell and a sign around the neck?.
Live your life.
I NEVER had blisters or weeping areas. I checked with the CDC site immediately to find out IF I were infectious. That is when I learned about the Zoster Sine Herpete type of shinges. ( outbreak w/o blisters) I am more @ risk. I was very careful to limit my contact with my friends and did not touch them, not for fear of passing on my shingles, but for fear of being given a germ myself.
I have this product that you spray on once per day and it helps keep you from protected from other people's bugs. Of course I wash my hands frequently with warm H20 and soap, in addition to using the "Qore-24".
TY for your warning Eileen.
Christine
Steve, I intend to "life my life"! TY for your support!
Christine
That's fine then - but my warning is as much for the many other people who look in on this site.