Hi i have just picked up my first pack of Pred, having read the patient leafleflet i am scared stiff of taking this medicine, 5 in 20 suffer mental health problems, is this really true,i am due to talk to my gp on monday as i found out my blood test show normal readings so very reluctant to start meds just incase i do not not have PMR
can anyone give me some sound advice my dosage is 3x 5mg for the next ten days
Hi Jean,
I have been on Prednisone over 2 years and still appear normal, at least to myself... Seriously though, I started on 20 mgs, 10 in the morning and 10 at night. Within a few days all my PMR symptoms disappeared. I had some trouble sleeping at first and felt really hyper, especially as I had been virtually disabled and really sick and exhausted from undiagnosed and untreated PMR for nearly 4 months. My body eventually adjusted to the Prednisone. Within about 3 weeks I dropped the dose to 15 mg, all taken in the morning. I now take 3 mgs and am about to drop to 2, which will take about a month or so to do.
Since being on Prednisone, my blood has been normal, but a person can have PMR with normal blood ESR and CRP. One of the diagnostic tools for PMR is Prednisone. If it works and the symptoms lessen considerably or go away, then you probably have PMR.
My Dr wants to see bloodwork on a monthly basis to see whether the inflammation is controlled on the dose I am on. So far so good.
Hope this helps. Others will chime in, I am sure. All the best.
I have been on Pre since about the 17th January and do far they don't seem to have had bad effects on me. Before taking them I could hardly move and within a few days was feeling much better. I would say give them a week to see if they work.
I started in the same dose as you-15 mgm. This is not a high dose. Extremely high doses like 49-50 minutes are necessary for certain disorders. That can result in emotional instability in some.
Before I started on the pred, with that horrible pain, I was ready for someone to shoot me and put me out if my misery. Within a few hours of my first dose I felt jubilant and grateful for the relief.
Have you ever listened to the side effects of some of the meds they
advertise on TV? They are just as scary as pred. They say
sometimes even death occurs. Can't get much scarier than that.
I've been on pred for almost 3 years and have had some of the bad
stuff happen but when the alternative is constant pain I guess you have
to take a chance. The only thing I felt in the beginning was being a little hyper but did lose some weight (who says it's all bad) unfortunately have gained about 30 lbs.since. Like the others say
try it and see if it helps your pain and then discuss it with your doctor.
and make a decision.
I've been on preds for 27 months and am no barmier now than I was at the beginning. If you do have PMR then the side effect of not taking preds will probably be about 90% immobility, I couldn't even take my specticles off unaided
I know just how you feel I couldnt pick up a glass of drink next to me. At one point I couldn't see the point in carrying on because there didn't seem to be any quality to my life and the pain was so bad. I'm good now not completely pain free just a few aches but life is good again.
........and I've been on steroids for 14/15 years (I really can't remember and will have to work it out sometime) and am no more weird than I was pre-Pred (I have proof).
Excepting my memory, which is more like a forgettery, but I think I was tending that way forever!
Yes, me too, such agony. Couldn't get up, couldn't sit down, get dressed, stand, sleep from pain, move my head, turn on the light, bend, lift my arms, get in and out of tub. Just wept. SO thankful for Prednisone!!
Wow! That is a looooong time.
I have never had raised blood markers. Ever, even when I couldn't get out of bed, even to get to the toilet.
As someone has said - look at any other data sheet - you wouldn't take paracetamol/Tylenol or the pill or anything else.
This is taken from a scientific study on pred:
"Results: Symptoms of hypomania, mania, depression, and psychosis occur during corticosteroid therapy as do cognitive changes, particularly deficits in verbal or declarative memory. Psychiatric symptoms appear to be dose-dependent and generally occur during the first few weeks of therapy. Patients who must remain on corticosteroids may benefit from pharmacotherapeutic approaches, such as lithium and the new antipsychotic medications.
Conclusion: Mood and cognitive changes with corticosteroids appear to be common but generally mild and reversible side effects. More studies are needed to determine effective treatment for steroid-induced psychiatric disorders."
This says that mood and cognitive (memory) changes are common with pred - we all call it "being bad tempered" and "brain fog", can't remember words or can't spell. Or we can't sleep well. These are also classed as "mental health". Probably about a quarter will complain of those things. But no-one gets all the side effects of pred and some people get none of them. I had next to none with one sort, a load with another and none at all with the current form. It all depends, but the data sheets written by the manufacturers have to list every single thing that happened while on pred, and some of them were coincidence.
The first bit lists the really bad aspects - which occur with high doses and really don't often happen with the doses used for PMR. Of the hundreds of people I have "met" on the 3 forums I am a member of who are on pred, only one has had serious problems - and she has GCA plus other previous history things and was on about 60mg a day. As soon as the dose came down, she has been fine, she still takes pred.
I had 5 years of PMR without pred: I had memory and concentration problems, I was bad tempered and depressed - that is part of PMR and if you don't take pred you will almost certainly become depressed. Believe me, being in constant pain and being limited in what you can do really gets on your nerves after a while and REALLY doesn't improve your temper! So it doesn't matter if you are on or not on pred - they will very likely happen.
Take them - and see what happens. if within a week they haven't helped - THEN consider discussing it with your doctor. If what you have is PMR you will almost certainly notice a difference within that time. For me it was 6 hours, I could move. You are aware of what COULD happen, tell your husband/partner/a friend and ask them to watch out for you being "strange" if you are that worried. But try them - if what you have is PMR you'll wonder why you worried.
It's very hard as people don't understand the pain you are in I cried loads just felt so helpless. The doctor just wouldn't listen in the end I was admitted to hospital as an emergency with some sort of allergy. My tongue, neck face was swollen that was a blessing in disguise as they kept me in to see why I couldn't move. Within 2 days I was on steroids and able to move again.
I've been on and off (mostly on) pred for almost seven years for GCA (first) and PMR. Due to the chance of blindness I don't have a choice. My rheumy starts me with the recommended 60 mg of pred for a GCA flare. This last flare I had to go up to 80 mg. When I took the lower dose pred for the PMR it was like a miracle. I do have many side effects but I don't think I'm any crazier than I was before this all started. Good luck and try to keep a sense of humor.
Hi everyone, thank you for taking th me the courage to starting pred, i will lete time to reply, you have all given you know how i get on
Hi everyone, thank you for taking th me the courage to starting pred, i will lete time to reply, you have all given you know how i get on
I can only repeat what other have said having been on Mr Fred for 20 months with very few 'problems'. Looking at the positive side 75% don't get any mental problems!
Best of luck and hope you in the 75%.
Love 'forgettery'! Must use that one 😄😄
Hello Jean.
Just to reiterate what the others have already said. I have only been on Pred for 2 and a half months and the major side effect I have had is being able to move without pain. Not a bad one is it?
If I had to pin point a "side effect" then it would possibly be a slight change in outlook. My wife and myself are pretty opposite in many ways. She is a control freak (she herself admits this freely) and also the engine in this relationship whilst I am the easy going hippy dippy procrastinator who will quite happily let her steer the boat with a few gentle tweaks from me. Lately, I have found that I will just say "no" and won't entertain an argument or discussion. Don't know if that fits with Eileen's definition of bad tempered or not. I tend to see it as a way of keeping stress out, no arguing you see.
Don't know if that helps but everything you read on these forums will help. We are all different and we all learn from each other
Good luck girl and you'll probably be with us for a couple of years.
Ron.
Not with my definition of bad tempered no - that is just being firm
My version of bad tempered involved a degree of strong language too - with or without pred!
rocks and hard places really. Side effects or symptoms. The short term memory loss, lack of concentration, difficulty problem solving were things I became aware of after taking pred. The rapid mood swings, so much more descriptive for me than simple bad tempered, also seemed to arrive with the pred. The feeling of losing my reference point (my groundedness if you like) was just a tad scary until I figured out what was happening. The highs were perversely enjoyable, though I had to warn people I was in "silly mode". Fortunately I avoided any deep lows. Fairly important through all of it to talk about it with wife and others so they knew what was happening and I had some stable reference point.
I guess I may have been mentally unhealthy, but far from mentally ill.
But.
I didn't for a moment contemplate not taking the pred. The memories of four undiagnosed months of excruciating screaming pain while trying to carry on as if nothing was wrong were sharp enough to have me keep taking the pred. They are still sharper than memories of side effects.
Its now been almost two years of pred, I'm down to 3mg/day and feel mentally "normal".The mental goings on seem to have been and gone. My fuse seems to be a bit shorter than before pmr, but I'm also older and generally grumpier.