I was diagnosed with PMR March 2016 (male 57) and started on 30mg preds - the effect was almost magical. The pain (neck, all around my shoulders, hands and legs) fizzed away, the fed up tiredness went with it and by the next day apart from feeling a bit "spaced out" I was pretty much back to my old self.
Was diagnosed with GCA following a trip to hospital last Sunday and put on 40mg of pred for 2 weeks then 30mg for a month and the Rheumys advice was to follow Prof Kirwans guidelines 20mg for 4 weeks then as per PMR - 15mg 12.5mg then 10mg for 1 year etc.
The reason for the post, I feel awful on 40mg. Totally fed up, can't concentrate or think straight , am waking up at 4.00 in the morning. Pain that comes and goes across my neck and top of my shoulders and into my hands, also my legs from knees up. Also lots headaches. The burning headache across and into my right temple has almost gone, has just left a dull ache?
Been to see my GP this morning and he suggested dropping down to 30mg a bit ear
lier, (tomorrow) than the Rheumatologist suggested because he felt that the above could be down to Pred side effects.
Any thoughts or comments greatly appreciated. I am now very wary, if not scared of reducing the preds too quickly. It seems like that could have been the cause of my problems last Sunday. I know its impossible to "know" exactly but it does seem that if I had not reduced so quickly in the first place I would not be where I am now.
I have got a referral to see a Rheumatologist, just waiting for appointment to come through.
Also just had MRI scan results back which show a "mixed displacement between C3 C4". I didnt know I'd got it! Scan shows that neither the disc nor some slight bony spurs are touching the nerves and advice is to leave it alone for time being as hopefully it will right itself.
Or is this just the way PMR GCA works, get used to it and man up, as they!
Many thanks
Chris
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Some very experienced and knowledgeable people will give you advice, but thought I would reply just to say you are not alone. I was diagnosed last June with both PMR/GCA started at 40mgs, felt great to start with then the side effects really hit. Insomnia, depression and all the other joys of Preds - Rheumy says I am sensitive to it so seem to get lots of the possible side effects. Down to a wobbly 13.5 (having 3 flares so far - going back to 30mgs each time), but the side effects are still very much part of my life and cause me frustration.
Its not a case of having to 'man up', it is a serious condition, with an unpleasant medication to control it - so acceptance and being kind to yourself is the order of the day.
Thanks for you kind thoughts, I hope you find some sort of "balance" with the preds soon.
I've decided to follow Rheumatologists advice and sytay on 40mg for 2 weeks. Side effects might not be fun, but I am still in pain which I guess is the PMR.
Sorry to hear that after a couple of good weeks, things have gone to rats (for want of a better expression)!
Your lack of concentration and sleep can be attributed to the Pred for sure - most people have that in some degree. But I am concerned that you still have a lot of pain, that in your lower body could be attributed to your back I suppose, but the head, neck and shoulders are a bit worrying. Although, as you have been on 40mg for less than a week, maybe the Pred hasn't got control of the inflammation as yet. Personally, I would have thought another 2 weeks at that level would be more appropriate rather than a drop to 30mg.
You say your GP thinks these pains are caused by the Pred - but usually Pred does the opposite - it's masks most pain. It might make you feel rotten in other ways, but not in pain.
If you drop to 30mg from 40mg I think you'll end up with withdrawal symptoms - too big a drop. Between the doses 40mg to 20mg a drop of 5mg is more appropriate.
As tomorrow is the weekend you are in a bit of a Catch 22 situation, but would suggest you try and speak to someone in the Rheumatology Dept on Monday, and in the meanwhile, if it were me, I'd stay at 40mg, but obviously I can't advise you to do that, so really it's your decision. If you are concerned about your headaches, then attend A&E over the weekend - at least that way you should get advice from a Rheumy - if not in person, at least over the phone!
It's not a case of 'man up and get over it', it takes a lot of getting used to, and coping with, but if you are on the correct level of Pred, then you should be relatively pain free.
I've decided to continue with Rheumatologists advice of 40mg for 2 weeks then if symptons have stopped to reduce to 30mg for a month. As you said if I am still in pain and stiffness then the inflammation is not yet under control.
Think I was just feeing a bit sorry for myself yesterday, I understand it is a serious thing and it is taking a lot of getting used to.
Glad to hear you're sticking at 40mg for time being. However, you may find the drop from that to 30mg a bit too big - you may be okay, as Nethyman says men seem to have an easier ride than ladies. But if it were me, I'd be inclined to drop by only 5mg - that's near the 10% figure that is usual recommendation. If you're determined to do it in monthly periods, then 2 drops of 5mg each fortnight equates to one of 10mg - and probably easier on the body.
Not determined to do it monthly, the Hospital Rheumatologist suggested 40mg 2 weeks then 30mg for 4 weeks then hopefully would have been seen by the Rheumy whom I'll be looked after.
My GP has agreed that I can control the speed / rate of reduction and go up a bit if I need to, which I feel is good.
I (67 years male) was diagnosed with PMR/ GCA on 5 May 2016. Started on 60mg Preds dropping by 10mg every 2 weeks. Took about 3 days to get to where you were on day one. The fourth day was not so good!
Last Wednesday I had a 'flare up' in my right temple, face and jaw. Spoke to the GP as I was due to reduce by another 10mg to 30mg on the Friday. The recommendation was to reduce. This I did on Friday and everything seems to be relatively OK at present (now Saturday). Still a slight headache and ache in the right face/ jaw.
With me the 'flare ups' seem to move around the body at the moment.
I also have some hearing problems which to GP did not seem to relate to PMR/ GCA, so if anyone has similar effects, I would be pleased to hear from you.
Further I have not been referred to a rheumatologist, just been treated under the GP. Is it usual to get a referral? I would add that I am in the Highlands of Scotland so this may differ from English NHS, although we have an excellent rheumatology clinic in Dingwall.
Reading some of the information I do not think males suffer as much as females, so we will have to 'man up' to it.
Not sure about the referral. I suppose if you've got a good GP who cares and will listen, that might be better than a Rheumatalogist who you only see every few months?
There is a paper from Bristol by Prof Kirwan whose regimen for GCA is
60mg daily for 4 weeks or untill remission induction, then
50mg daily for 4 weeks
40mg daily for 4 weeks
30mg daily for 4 weeks
20mg daily for 4 weeks
then as per PMR
15mg daily for 6 weeks
12.5 mg daily for 6 weeks
10mg daily for 1 year
reduce by 1mg per month thereafter
And on the forum here there is a "dead slow plan" which slows the rate of reduction over a longer time, by taking (if I've got it right)
1 day old dose 1 day new dose
2 days old dose 1 day new dose
3 days old dose 1 day new dose
4 days old dose 1 day new dose
5 days old dose 1 day new dose
6 days old dose 1 day new dose
1 day old dose 1 day new dose
1 day old dose 2 days new dose
1 day old dose 3 days new dose
1 day old dose 4 days new dose
1 day old dose 5 days new dose
1 day old dose 6 days new dose
Personally I think my recent problems have been mainly because of too fast a reduction and not stabilizing the new dose properly or for long enough.
If I've understood properly the advise is to reduce by the smallest amounts especially the lower the dose is.
At the moment if feels like my legs are on fire!
Thanks for your thoughts and taking the time to write, hope you get the pain and flare up under control soon.
Thanks for getting in touch and the link to PMRPro's post. You are right of course I've got the first half backwards.
Things are settling down a bit, although still in quite bit of stiffness and pain, not as bad as before the Preds but worse than when I was initially dignosed and started on 30mgs!
Thanks again for getting in touch, I'll copy and paste the link next time, stupid mistake on my part.
Hi Chris. I have GCA diagnosed Jan 2015. Personally I think you are doing the right thing by sticking at 40mg, because you are still in pain and the important thing is to get the inflammation down. If the head pain worsens go straight to A&E. It is always better to err on the side of caution than to have permenant vision problems. Also probably a good idea to get bloods done, sooner rather than later Just to check your markers ... Then again when you feel better. It will give you framework for what is normal for you.
As for the side effects of the Pred. I am with you on this... I suffered badly with mood swings, insomnia, manic energy and severe fatigue... Be kind to yourself, rest as much as you can. Your body is going through hell at the moment and providing you are on enough Pred things will settle down and you can think about tapering. Good luck X
Thanks for your thoughts and advice. I've stayed with the 40mg as you said and have done almost nothing today, and do feel a little better (just replying the same to Nethyman) except my legs are on fire at the moment!
I think I'm struggling coming to terms with the fact that its a serious thing and as you put it our bodies can be put through hell!
Hi Chris. Sorry to hear about your tough experience on Pred. I was diagnosed with PMR & GCA in June 2014 at age 49. Also started on 40mg but stayed on that dose for 10 weeks. I was an absolute mess mentally and physically at that dose. However it did save my eyesight which is the most important point in anyone with GCA. I had many flare ups on 5mg reductions and eventually had to reduce at 2.5 mg then 1 mg and currently only 0.5 mg on the dead slow and stop method. I am currently on 7mg. A lot of my side effects reduced at about 10/12 mg so you will get there but unfortunately you do need to be patient on this long journey.
I've read about the "dead Slow and Stop" method on this forum and plan to follow it. My GP had agreed that I can conrol the rate of reduction and go up a bit if I need, which is good.
Also is good to know that there is light at the end of the tunnel.
I'm relatively new to this condition as well. Let me start by saying this group is so full of wisdom and experience and knowledge- and support - it's truly a goldmine.
Don't fight the pred. It is miserable. I was diagnosed in January of this year... And the treatment became almost worse than the disease. I had just about every side effect there was... Bizarre nightmares when I slept - which was only 2 hours at a time for many weeks... Shakiness so bad it changed my penmanship... Thin skin, dry skin, itchy skin. Irritability and moodiness that alarmed even me. Fatigue was crippling. But no more pain after about 3 weeks on, and the severe pain was gone much sooner.
I lost my (really great, well paying, been there for 8 years...) job last week. They say is not my condition,but I'm sure that didn't help. My husband loves me but isn't adjusting well to having me at home all the time...I used to travel a great deal for work. After 6 mos. the appetite finally kicked in. I want to eat everything not nailed down, I've gained 10 lbs and my cheeks look like I'm pocketing food. I'm sleeping again... MUST have 10-12 hours a night or can't function... And I'm lucky to have 4 good hours a day to do anything outside of resting, reading, etc.
That said ... Again. Don't fight the pred. The pred is your only hope to letting this condition run its course and get you to a tolerable pain level until your body realizes you are not the enemy. Read and learn about the really slow withdrawal/ tapering on this board. It's the one key you can control.
To close... The greatest change and growth I have faced with PMR over the past 6 months is learning how to accept - the illness, myself, the symptoms and side effects, my self image and expectations.... Please, listen - it is futile to resist. It is Not something you can FIGHT... You will be battling your own body which needs your attention, understanding, acceptance and care. Treat it well and wait. PMR should not be permanent. Learn to accept yourself, your limitations and your condition... Don't waste your valuable energy on resistance, anger, frustration, etc... (I'm still working on that one).
I wish you well. You CAN fight with your doc if u need to. Or get a rheumy. Advocate for yourself, and keep educating yourself. Love yourself...
You are right, I would have been totally lost without the people in this group.
I think my Doc is pretty good, he cares and has agreed that I can have
some of the control over rate of reductions re Preds etc. He has also referred me to a Rheumatologist, just waiting for the appointment to come through.
I do need to come to terms with the fact that this is a serious thing, and as you say to accept, learn, understand the illness, symptons, and side effects.
Like you this is, and probably will continue to be a big change in my life!
Hello Chris, Sorry to hear of your new development. I am lucky I do not have GCA so perhaps am not qualified to offer advice, but, I'd rather offer it, you don't need to take it, than to not offer any at all.
I would say stay on 40mgs and bite the bullet re the side effects. I appreciate you are having a hell of a time with them presently, but you have been put on this high dose to essentially save your eye sight. The giant cells need to be reduced and preds are the only drug that can do it.
All the symptoms you are describing are the side effects of the high dose. These side effects will get better.
I have nothing else to say other than for some, like you the first couple of months on the high doses can be a bumpy ride, so hang on in there.
Hi Chris, I totally agree with all of the above comments. You also might want to study up on an anti-inflammatory diet. I think that has helped me and instead of gaining weight on the Pred I have lost 25 # which I needed to lose. I have a belly pooch which is new to me and I bruise easily but I am essentially pain free. I was diagnosed in Feb 2016 on 20 mg of Pred. I tried to reduce by 5mg and that was too much of a drop and I had a flair. .....back to 20 mg for a week and now dropping 1mg per month. So far so good and down to 18 mg. I have accepted the fact I am going to be taking Pred for some time and I will adjust to the "good" , the "bad" and the Ugly" days. Learning what works best for you is the key and it takes some time to do that. And as for that "Man Up". I went thru that too....thinking I will just take some Tylenol and live with it. This disease is serious but manageable and you just have to find what works best for you...All the best to you. Linda (age74)
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