Hi. I've had pmr for 4 years, and after much effort have reduced my dose to 15mg. I've had headaches and, on and off, problems with my vision for the last 3 weeks. I informed the rheumatology department of this today and they've swung into action thinking it might be gca. I have to take 60mg today. Never taken that much before so I wonder if anyone could advise me on likely side effects? I'm quite depressed about it as its been such hard work reducing to 2.5. Also worried about being on such a dose with covid about. Presumably it makes me more susceptible?
I'm having blood tests and a scan on weds.
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Jontie
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Oh drat! What a disappointment. You need to take this Covid or not; they wouldn’t have prescribed it if they didn’t think it was necessary in these times. We’re all different but expect to feel wired with racing thoughts. I thought I was quite the wit and sharp as a razor but I’m assured by those around me I wasn’t. My concentration became poor so I stopped driving until the dose dropped. Many get anxiety - I just kept telling myself it wasn’t me and avoided anything on tv that had anything too emotive in it. You can feel both jittery but weak or think you have boundless energy, don’t listen to the latter and put away that to do list. I was one of those who felt uncoordinated and groggy about 1-2 hours after my dose so I took it before bed to sleep through that bit before the stimulant effect kicked in and I woke with the birds. Insomnia is usually par for the course and can be distressing but I found it’s best not to fight it and exist on naps. Appetite is usually increased and it is easy to get into the blood sugar boom and bust cycle eating sweet stuff so the weight balloons. This can be avoided with the very low carb diet and low salt we keep banging on about. If you can do that from the start, you’ll thank yourself. No you won’t feel yourself, far from it and that’s ok, it won’t last forever. Try to plan for having no commitments and keep an open mind but above all shout if you’re not ok, we’re here to help.
It is your choice of course but 60mg is a very different ball game to 15mg. GCA is serious even if it doesn’t have the scare factor of more familiar conditions that normally people wouldn’t hesitate to take sick leave for.
I would advise you to take sick leave if you can so that you can respond to what your body will be telling you eg lie down & sleep, make pot of tea,.It may be dangerous for you to do certain things at work due to lack of concentration or reduced awareness.
I found that when I gave up trying to carry on as usual , I managed to find a daily routine that suited me until my steroids had reduced to a level where I felt much more like myself again.
All the very best, keep in touch with the forum & take each day as it comes. xx
Brilliant response and summary - I think this should be another pinned post for anyone newly on high-dose Pred. I had to go up to 40 a few months ago and had all the problems you accurately describe.
Not immediately in terms of reduced immunity to it - no-one has any immunity and the only safe thing is keeping away from other people and you cannot trust anyone to not have it. And really - a few days of high dose pred is preferable to the risk of loss of sight.
Others who have taken that much for GCA will be along - but basically, pred often gives you wings and you may feel invincible. You mustn't give in to that! You will probably find sleeping difficult but don't toss and turn and suffer, just go with it.
Personal experience (starting 80mg for 2 weeks, then 60mg for 8 weeks) - feeling “wired” and full of energy - but don’t be lulled into doing too much, you will come down with a bit of a bump eventually once body acclimatised to high dose.
Talked for England, according to my hubby!
I did stop driving for a while, but not because I felt “out if it”, but due to adjusting to loss of sight in right eye and brain coping with that.
Some do get anxiety - I didn't, but that’s maybe because after 18 months I was so glad to get a diagnosis and finally being treated... and I’m not prone to anxious feelings.
Interrupted sleep for sure (fortunately only a few weeks in my case) but get help - my GP suggested on OTC sleeping aid, which was good enough to get sleep every 3rd or 4th night, but not addictive nor too strong, but then I wasn’t working. You may find it more challenging.
As others have said, we are always here when something crops up we haven’t mentioned - it always does.
On higher doses I find I often don't sleep at all one night, but then crash the next or the one after and have a really good refreshing sleep. I learned to just go with that flow as luckily I don't have to work any more
I also got roidrage and used to find myself saying ‘don’t you know not to mess with someone with roidrage’ 🤣. The best bit about the initial taking of 60mg is that for awhile you feel normal again but then reality slowly creeps back in. As far as sleep goes I was quite lucky that I was already taking 40mg of Amitriptyline and 50mg of Tramadol for my CRPS so at least I used to sleep.
Hi, Jontie. I've popped in here to sympathise. Like you I was on a very low dose of Pred when a sudden onset of double vision prompted my rheumatologist to put my dose up to 60g. I'm not ashamed to admit that I had a bit of a cry right in front of him! Everything happened very quickly and it was all a bit of a shock. I had a blood test the next day followed by an ultrasound scan the day after. I was fortunate and was on the 60g for only three days but I do understand your concern about the high dose which is vital for your own protection against serious eye problems. It is a good thing that your rheumatologist acted swiftly.Others have mentioned symptoms that will have a good game with your emotions, sleep and heightened/ reduced energy. You may get them all or some. Keep us informed and we will keep you company from a distance.
I didn't need the high dose after sixth nerve palsy (double vision) was diagnosed. A prism was fixed to one of the lenses in my glasses to realign my vision. It was changed to a lower strength as the condition improved until I no longer needed it.I don't want to raise your hopes but things may not be as bad as you may think. Whatever the diagnosis your rheumy appears to be on the ball and will, I'm sure, proceed with the care he/she has so far shown. Once you've had the diagnosis you will know what you're dealing with: then, one day at a time.
I was placed on 60 mg 12/30/2021 after ER visit and IV methyl prednisone and IV morphine.l had been at 7.5 after 22 months so understand how hard this has been. The headache, eye pain and jaw pain terrified me.On 60 mg, I experienced fatigue, fuzzy thinking, increased appetite, insomnia, lack of coordination, grumpiness and elevated BP and Buddah belly.
4 weeks later I am at 30. Hoping to be at 20 by Feb 15 when l will get second Moderna jab. My rheumatologist, opthamologist, primary encouraged me to get vaccinated and yet to continue to be very cautious about contact with others.
75 years old, no loss of vision thankfully. Edema around eye orbital area from prednisone. Ophthalmologist ruled out thyroid eye disease as I had RAI for Graves in 1993. Find myself very light sensitive. I think this is from Prednisone. Eyelids are red as well.
I was at 60 for two weeks, 40 for two weeks. now 30. Hopefully 20 then 15, 12.5 to ten but will have to play it by ear. I have gained 5 lbs but also had just stopped diuretic 12/28. Previously had lost 30 pounds since starting on prednisone.
Wishing you the best as you taper. I was so intent on reducing prednisone because of COVID concerns that l tuned out the pain l was experiencing. Won’t make that mistake again.
Thanks. I fear I did exactly the same as you. Tolerated too much pain in order to reduce pred for Covid. One positive of 60mg was getting out of bed and dressed like a normal 56 year old, for the first time in ages!
That is a plus.I on the other hand gave in and bought two new flannel nightgowns. The lessons we learn ☺️ l encourage you to focus on your nutrition. It will support bringing down the inflammation imho
It is worth getting it checked by a really good optician - I was lucky, mine then was superb but even he was stumped. We suspect it may also have been an allergic reaction to a change in recipe for my contact lens solution but there was also a problem with dry eyes - managing that helps a lot.
buddah belly ..... snap! you did make me laugh , thanks from fellow struggling chubster, buffalo hump and moon face! who is that in the mirror? still happy soul inside, especially knowing lovely caring peeps like you on this bumpy path. grandmother polly.
You've described me too, to a T! Unlike Boris I hope to return to look like a normal human being in time. I've been here before and I looked great again once I got to around 5 Pred and started doing low-carb, these things shall pass ...
I initially (May 2020) had 3 infusions of steroids then 50mg daily for a few days. At this level I had cold sweats at night so severe I had to change my pyjamas. My rheumy reduced me to 40mg and although the sweats continued they were not so intense and were manageable. I’m now down to 8mg and the only ongoing side effect is fragile skin.
Hi Jontie, I’m GCA, left hospital on 60 mg, last August after diagnosis, had the very disrupted sleep early on, never had the mad energy people talk of ( naturally high energy anyway) but have felt the permanently jittery and weak combination ever since. Currently alternating 12.5/15mg and the buzziness is increasing rather than diminishing. Double vision went after a week, still have blurriness though nothing wrong with eyes per se, I’m told, it’s the brain interaction. Other side effects are sudden high bp, then side effects from meds to suppress that. Also urinary leakage ( still waiting for referral for that). Oh, and round face and weight gain, but I’m learning that we don’t all respond to pred in the same way. So, very good luck.
I think if its needed best be safe after all it is your eye sight, ive been on high dose like that felt better got rid of headaches but eating alot is a negative.. Good luck
Hi Have you had the covid 19 jab? I had mine a month ago and a week ago I had the same systems you have had I had blood test for my PMR and all was ok I was on 1 mg doctor put me on 5 mg and I am now feeling ok. It was on here that I read that several people have experienced the same so it seems that this is a reaction to the covid jab perhaps this could be the same for you.Mike
No I've not had the jab. I'm hoping that with my new dose I might be bumped up the queue a little? Not sure if being on pred makes you a priority. Glad yours wasn't GCA anyway.
Just to balance those who sadly got bad effects from 60mg. My pain disappeared, my throbbing temple headache and visual disturbances went.I was on 60 mg for about a month.I had no problem sleeping and carried on working as usual.
No emotional swings.
Cut carbs, and eliminated added salt immediately. I never ate stuff with added sugar.
No weight gain.
Didn't do much physically ...have had a sharp decline in physical stamina since PMR.
But otherwise felt fine.
Went into isolation (pre-corona) so that I wouldn't pick up any infections.
And life rolled on.
I do hope you have a similar experience...it is possible.
GCA - 45mg for a month while waiting for hospital appointment -all symptoms disappeared after 24 hours and never returned (2 years ago but now have PMR and tapering from 15mg)Until I got down to about 20mg I had overwhelming anxiety, muscle weakness, hair loss, hair growth on face, moonface, blood sugar surges and dips, extreme fatigue and insomnia. I coped with it by knowing that all this was drug-induced and it would pass - which it did. I still sleep for an hour or so every afternoon, can enjoy walking at a slow pace and managed to plant out 100 snowdrops a week ago. I'm hopeful that life will return, I'll be greyer, older and a survivor. I hope you are luckier but whatever happens you will on the road to recovery.
on 50 mg. I sat up in bed all night making a list of everyone I was going to kill. If you knew me you would know that is impossible, but not on high dose Pred. Fortunately it only lasted one night. On 40 mg high dose pred I am every person's least favorite aunt, loud, talkative, saying weird off the wall stuff. But, it passes, and I return to normal nice self as the dose goes down. At 20mg life is perfect, but it is a false dichotomy. 20mg of prednisone makes me feel like I can conquer the world, but all the time prednisone is doing a lot of damage at that dose. At 15 I get by and feel good, achy and sore, but good. Blood pressure can't be controlled, but I feel wonderful. Am now down to 7.5 mg. , but am sure SED is elevated. I also have pneumonia right now so hard to tell. Due to start Actemra I.V. but stalled because of pneumonia.
After several years of being unable to get SED down without 10mg pred a day, it is time. Hopefully this will bring things under control. In my case have been dealing with this for several years and we can't get it under control. I was on Actemra last year, went off it, huge mistake. Doing I.V. this time hoping it works better. Hang in there. Short term high dose prednisone will not hurt you, but you need to pay attention to side-effects. Low salt is vital.
Would you let me know what sort of eye problems you were experiencing. I too get them, a bit tired looking and generally just not normal, a bit hard to describe really, and watery. I managed to get down to 9mg from 40 mg when my GCA kicked in (originally put on 15 mg for PMR) eyes improved as the dose lessened. However, a week today I was getting pain (which I now realise was probably Osteoarthritis) but I immediately put myself up to the higher dose of 15mg again. So disappointed as it takes us so long to taper. My eyes are horrible again since increasing and sure my pressures have gone up too. I didn't stay on 15mg that my rheumy recommended I do for a month, but stayed on it 6 days instead, now taking 12mg. I think I'll reduce again soon just to sort my eyes out again and no point in being on a higher dose if it wasn't PMR but OA. 1 Feb should have seen me on 8mg for the month and reducing by 1 mg each month thereafter. I will have to wait and see how I go. Very jittery again too.
I also got roidrage and used to find myself saying ‘don’t you know not to mess with someone with roidrage’ 🤣. The best bit about the initial taking of 60mg is that for awhile you feel normal again but then reality slowly creeps back in. As far as sleep goes I was quite lucky that I was already taking 40mg of Amitriptyline and 50mg of Tramadol for my CRPS so at least I used to sleep.
Not everybody crashes and burns......and you have to keep in mind that the medication is responsible for safeguarding your sight.
That might sound a bit OTT, but from someone who lost sight in one eye before diagnosis.....my view (no pun intended) the side effects are worth it.....and whatever ones you may get, they can be managed.
As for vaccine - this info from versusarthritis -
Some people who are taking drugs that suppress the immune system may be given advice to continue avoiding exposure to COVID-19 after they have had the vaccination. This is because their medications could mean their immune system doesn't respond as strongly to the vaccine as people who don't take these drugs.
Sharing my experience with higher dose pred in hopes of calming someone's fear of taking the prescribed dose. After being suddenly bed-bound for a month, I was diagnosed with PMR and some symptoms of GCA. Started on 40 mg for a month, then two months of 30 mg (then tapered too quickly, so back to 20 mg and slower). I did not have any disturbing side effects. Two minor issues were needing a bedside commode and dealing with some specific food cravings. Once I ate a normal portion of the food I craved, like orange juice or spaghetti or oatmeal, it didn't bother me again. Had to stay very low sodium to reduce swelling. Have been on pred for 2.5 years, currently 7.5 mg, and have not gained weight. I do think that staying on a well-rounded supplement program of high quality products helped me to avoid the common side effects.
Hi Jontie I've had PMR for nearly 4 years the most I had to take was 40 and I was on top of the world had a spring in my step it was when I had to come down to 30 it was like being hit with a train x
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