atypical GCA or not GCA at all???

That all sounds a good plan. You can get positive results even after a couple of weeks of high dose pred - it is just it isn't always accurate but it sounds as if they are aware of that.

Thinking of you - fingers crossed it all goes well and they get a sensible answer.

PS I forgot to add that I had perfectly normal ESR and CRP before, during and after treatment.  Never even a slight elevation.  But still was treated.

Yikes!  80 mg seems very high.  Good to hear that you could successfully reduce from that.  Did you have bad side effects with the high (over 40 mg) doses?  The lack of abnormal ESR and CRP are a surprise to me too.  

This is only my second day on 60 mg prednisone and I have not had blood pressure checked, but on 20 mg my bp was somewhat elevated (133 systolic versus usual 100 to 115).  Maybe that is within the normal range if you are a bit on edge at the doctor's office. I had a high heart rate some mornings when I took 20 mg, but am not having that now, oddly enough.  

The main problem I am having is insomnia. I have long (4-6 hr) intervals of poor sleep- it seems that I am not sleeping but I probably do sleep some.  I'll remember that the clock said 12:35... then 12:55... then 1:15, etc.  It is very unpleasant.  My eyes are dry and sore and I'm not awake enough to read or listen to podcasts.  I have started getting up and going on the computer or having some chamomile tea to warm up.  I usually sleep a few hours in the early morning but feel really dazed the next day.  All I have taken is melatonin, which some days seemed to help, other days no effect.

I am not sure whether I have anxiety.  I am having some trouble concentrating and feel restless, but I am also in the middle of this crazy process.  

This is turning out to be not my favorite disorder, though there are certainly much worse things running around!

 

Hi Mary Jane

I have had, amogst other things, high BP, high blood sugar, high colesterol, put on weight, brain fog, poor sleeping, peeing more than normal (for me).

What I did - apart from learning to live with it - was talk to the nurse at the clinic - my rheumy was keeping track of the "more serious?" things like liver, kidneys and control bloods but he wasn't looking into the other things. I had a routine check with the nurse and she asked if anyone was keeping an eye on my BP etc. as everything was very elevated - on the edge of needing treatment - after that I have been to see her once a month. Fortunately I seem to have got away with it - no extra meds. and as I am now HOPEFULLY on the way to getting my pred down to a   maintenance dose I am hoping that the worst of it is over with.

I had some success getting my weight down with a low carb/high fat diet, strangely enough my colesterol fell also, I had been wondering whether that would have gone through the roof with all the full fat food but it didn't.

Don't know if this was any help Mary Jane.

Hope so.

Janet

Yes, I too think that 80 mg was too much, now that I've read the more common lower doses that were taken by people in the UK, but I reluctantly took what he ordered at that time.

Beside the elevated BP, I started to have some psychological issues that were very unpleasant - almost like constant chatter in my head hearing voices and starting to have visual hallucinations.  It was dreadful.  Luckily I was only on that much for about 2 weeks then the taper began. 

And  on only 15, I have the same BP issue but NO psychological effects.  And , now that you mentioned it, also dry eyes, eyestrain from the computer screen, trouble concentrating, short term memory loss and yes trouble sleeping. How could I forget those?  I guess they take a back seat to the high BP and the feeling of anxiety.

 I take 5 mg ambien to get some sleep and also I also prepare a glass of magnesium citrate powder and water with ice cubes to sip on after dinner .  It contains about 615 mg of Magnesium and I do believe it helps me sleep longer than the ambien alone.  Does cause some cleansing of the bowel.

I am very frustrated to have this PMR appear in my life.  You are right that there are much worse things running around, but to me, this is a nightmare disease that has me in a worry mode that I am trying to shake. Not having much success. You seem to be taking in stride and I admire your ability to do that.

Your assessment that I am handling this well may be premature.  My first PMR symptoms were in mid-December.  I think I am just in denial!

Please can I remind people NOT to take supplements of any sort together with pred unless they have discussed it with either their doctor or a pharmacist - even then the info may not be correct!

"Steroids and immunosuppressant medications -- People should not take melatonin with corticosteroids or other medications used to suppress the immune system because the supplement may cause them to be ineffective."

Source: Possible Interactions with: Melatonin | University of Maryland Medical Center

60-80mg is the standard dose when a patient has any visual symptoms at all - it is so high to reduce the risk of loss of sight as quickly as possible. In some cases they may even use 100mg, ususally as an infusion into a vein. These very high doses are only used for a very short time and then the dose is reduced in fairly large steps, usually 10mg at a time, or 5mg. The people you hear of on lower doses have had GCA symptoms with no visual symptoms and it is considered there is less risk to sight. 

Pred has 82 listed side effects, they are more obvious at the higher doses - yes, some may be associated with the illness the pred is being used for but it is obvious to us on the forum that people with GCA on higher doses have more problems at first but most of the effects do reduce as the dose reduces.

If you have raised BP - and it should be monitored by your doctor or yourself, often pharmacists will be able to check it without you buying a sphygmomanometer - then it needs some medication to control it. High BP is high BP, it doesn't matter what is causing it. 

If you suffer from any of the psychological side effects then either the pred dose should be reduced if that is possible (i.e no visual problems) or medication can be considered until they calm down.

I know it is easy for me to say - don't panic! You have a chronic illness, it is a pain in the rear, but it doesn't kill and can be managed well if you are sensible. The more you panic, the worse your BP and other side effects will appear to you. 

If you are so anxious - it could be the pred and you should be discussing it with your PCP and considering medication for a short time.

If you can't sleep, then for the moment you need to learn to rest at any time of the day or night when you feel tired. GCA and PMR have a considerable systemic effect - like flu. If you had real flu you wouldn't expect to carry on as usual and you also need to remember you are ill - even if you don't look it. 

It will improve, you aren't going to be like this forever, but at present it is a new and difficult experience. Be patient - if you don't learn anything else in GCA/PMR you learn patience eventually!

 

Thank you Janet for your input.  Yes, it was helpful to me to know about the side effects you experienced.  I have the  brain fog and forgetfulness too, but I keep telling myself they are caused by the prednisone and will stop once my dose is lowered. 

It seems you are being monitored pretty effectively. So far, I am not being monitored by anyone.  I might have to make an appointment with my PCP and ask him if I need some of the tests you are getting.

Thank you for your input.  I am glad we can share all these things on this site.  It really helps me to cope.   

For what it's worth, my reaction to insomnia is to turn on my little bedside radio. The BBC is wonderful all night long and my sleep is usually guaranteed while some quiet chatting does on.

Barbara

You have had PMR for 14 years!  I hope your symptoms are controlled and you are not in pain all the time. This condition gets more confusing the more I learn!

I assume your flare up was in the PMR- do you have widespread stiffness or pain, or does just one area flare up?

What symptoms alerted you that you had GCA?  Loss of vision?  Sensitivity in the temples or scalp or chewing?

 

When you say "now my eye is hurting.." what do you mean?  Can you describe the pain?  

Thanks for your help!

Yes my flare up is PMR when you come right down on the pred its fine for a while but if you have other things going on it comes back and you have to go up on the pred till the  pain goes. I have had my eyes checked and it wasn't GCA this time it was septic cyst under the lid  nightmare !! Ehen your Eye hurts on the left side mainly starts to close and hurts all down the side of face and over eye I get it checked out .

Know I am not in pain all the time the steroids are good they soon have it under control.