Tapering down my pred. Doing it by 5 mgs one day and alternative days 6 mgs. Appears to be working okay. But I feel so dreadfully depressed. Have felt like this for a few months to be honest. Got Docs appointment but cannot get in with the Doc I see and who I like until 6th March. I'm trying to explain to me husband and he looks at me blank haha. Finding everything hard work. Don't want to even move from sitting or lying down in bed. Nothing is cheering me up at all. I know its probs the PMR plus steroids. All I find easy to do is cry haha. Also can anyone tell me the name of test that checks if your adrenal glands are starting to work, Need to ask Doc this so I can get tested when at 4 mgs. I hope.
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Dappa
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Thanks for this link Dorset Lady. The information is very useful. I'm on 10 mg per day at present and feel reasonably well. However I'm aware that I'll soon be taking the drop into single figures and can expect some difficulties while waiting for the adrenals to kick in. Funnily enough I bought a secondhand copy of the book she mentions 'The Anti-Inflammation Zone' on Amazon and it arrived today, so I'll set about reading it tomorrow.
The test you are asking about is the synacthen test.
I really do think you should try to see a doctor sooner than 6th March - that is another full month and you are showing all the signs of being clinically depressed already. It may be the PMR, it can be part of that, or it may be the pred, or it might be both. Whatever, you need to be looked after now before it gets any worse.
Yes I have tried today to get in now with any doctor. Still keeping that appointment for the 6th March. But to no avail, they havn't anything at the moment before then. But told to phone every morning at 8 to see if they have any cancellations. I am sure its the pred though. Will try going up with it. Thank you. Take care.
Get your husband to call them and tell them you need an emergency appointment - that means NOW, not in a month. The reason A&E is overrun is because GPs aren't dealing with patients when they are only slightly ill - and it gets to crisis stage. They MUST see you if it is an emergency.
You are so right PMRPRO! My doctors surgery has no emergency cover so on Sunday rang 111 for advice. They set up a timed appointment at hospital Outpatients emergency GP appointment. Spot on time, in and out with antibiotics sorted. On Monday I rang 111 again. Couldn't get emergency GP appointment. Severe pain in centre of breastbone. Had seen nurse about it on 23rd Jan, but it was severe and had me in tears. 111 sent ambulance though I did say I didn't need ambulance. Paramedics spent quite a bit of time assessing me. Gave me the choice of A&E ( one A&E hospital dept already diverting patients) or they could ring GP for appointment. They did and I was seen in my GP surgery within an hour! What a waste of resources. GP then thinks I may have pancreatitis, so is rushing through urgent bloods. I hope not!
The point of my sharing an illustration of precisely the point PMRPRO makes. The outcome - someone could have died whilst I was taking up unnecessary emergency resources I. E. Ambulance / paramedics
Seems GP making up for it now. Bloods back. Mostly fine but slightly elevated something I couldn"t catch on phone. However looking on net issues with pancreas can be caused by meds and / or trauma or operation. I tick all three. Now fast tracking for CT scan to eliminate (hopefully) pancreatic cancer, so hope to know soon cause and remedy. GP did similar fast track a couple of months ago for bladder cancer due to UTIs over past two years (coincides with PMR timings). Given the vomitting blood episode when I broke my shoulder at Christmas I suspect I may have damaged something internally when I fell??? Following episode two emergency endoscopies revealed nothing so they assumed gastro / acid reflux, but didn't follow up at all. So it is a watch this space scenario......... here's hoping for a quick fix!!!!!
Ah Bless You Dappa, it’s not easy when you feel low, especially this time of the year & Reducing Pred as well. Maybe try 6/5.5mg alternate days or go back to 6mg & see how you feel.
How long have you had PMR & been on Pred? Two years ago l found myself becoming a bit low, it was very subtle & to the outside world l appeared to be OK but l had no pleasure in anything & realised l couldn’t remember when l last laughed!
I had a New GP ~ Dr Sarcastic Retired early but New GP spotted it, asked me to have a think about it, then go back to discuss further; which l did & very reluctantly agreed to try an Antidepressant, low dose then gradually worked up to the Therapeutic Dose. And, then l realised just how low l’d become, it did & has continued to make a difference.
PMR/GCA although not life threatening is life altering & to be honest l don’t think you can get away without being affected one way or another.
Thank you for the reply. Well in March last year I had a biopsy for GCA. All my symptoms pointed to this. But the blood test at hospital was negative, that's why I went for biopsy. Anyway whilst waiting for result I was given 60 mgs of Pred. Then after 3 weeks my biopsy came back negative so I then had to taper off them. A Rheumatologist then told me to get off these steroids quickly by tapering 5 mgs every fourth day. Now knowing what I know now that is absolutely ludicrous. So I did this and ended up feeling really unwell. Went to the A@E and got told that I was now showing symptoms of PMR. so they put me on 15mgs and then went to see my doctor. As like you my Doc retired who wasn't very good then got a really good GP. He told me to taper these now very very slowly. 1 mg every 8 to 12 weeks. If I felt unwell when tapering to stay on the mg longer or up my dose. He saw me at first every 4 weeks to see how I was coping. Really good Doc and pleasant with it. So every other patient found this out so always have to wait ages for an appointment with this guy now haha. I feel better reading peoples replies haha. I know its this Pred and feel like I can't see any end to it. You know what I mean. Thank you. and you take care.
You’ve had a tough ride & getting conflicting diagnoses re having GCA or not & the very fast taper isn’t the best way forward.
A discussion with your GP or any good one in the practice sounds like a good idea. Write down what’s happened & how you feel at the moment. You might be likely to burst into tears (no bad thing) but best to have your explanation to hand.
Let us know how you get on, it’s tough when you feel low & can’t see an end to it.
I have the same prob with my doctor. He's the one that diagnosed pmr so I don't like to see any of the others but if its urgent I will see all but one of our gp's. Everyone already knew.this doctor was the best it would seem because it takes.6.weeks to see him unless I am lucky and he's the duty doctor Chances are there will be other good ones in your practice. Please make sure you see someone urgently.xx
You need to see any doctor in your practice, do not wait until March. You are clearly depressed.and need this sorting now not in a months time. Sorry to be blunt but this needs an urgent doctors appt. Get your husband to cal in tomorrow morning and insist you get seen immediately. You never know your favourite doctor might be the on call duty doctor any way. Please keep.in touch with us all and let us know how you are.YBx
Thank you for the reply. I will go to the doctors and see anyone. It's so hard to get in my surgery. But I will get in as soon as. I know I need to see one urgently, to get myself feeling better. I'm thinking of going back to 7mgs I was alright on that. Thinking about it the black cloud came when I was halfway through being on the 6mgs then stayed when I tapered to 5. I've been taking it really really slowly as well. I'll be okay, it's one of the symptoms isn't it depression. Not been right well with a cough and cold like symptoms either, feel a bit of a demic really. I will get my hubby to call the docs. Thanks. You also look after yourself xx
If you get negative response from GP surgery ring 111 if in UK. I have twice recently with successful appointments made. See my response to PMRPRO above. Good luck.
Aw thank you. Just feeling very low at min. Got in at docs with another doc. Got some antidepressants only taking 10mgs of amitriptyline . See how I go on and going back to 7 mgs. Think it will be better for me in long run. Thanks everyone for replying back. That in itself makes you feel a lot better.
Let us know how you do. I too feel quite exhausted and emotional these days at 6mg I had been at 5 for a bit and experienced pain and tiredness and went back up to 6 and am better physically but still feeling tired. I am Sleeping 10 hours at night and a couple in the day.. which is crazy. But I attribute it all to being in the 6-4 range. And I am just going with it. I agree you should see the doctor.. but if you are one to want to be doing something constructive all the time.. and now cannot.. that surely would contribute. I think most of us do NOT allow ourselves to be Useless for a few days or weeks. (although I do) lots of books to fall asleep reading out there. NOW is our chance! Best of luck to you. I hope this gets sorted out.
I really try to get myself going but I just feel too tired. Went back to 6mgs not aching anymore and actually don't feel as down. I too am sleeping about 10 hours at night and still get up feeling tired haha. I am sat at present in dressing gown and just looking around house what needs doing. The one thing I really lack at the minute is motivation. I will let you know how I am doing. I hope you start feeling less fatigued in a bit. Sending lots of hugs
I am with you on this and think it’s being at this level ... slept 10 hours and been on the couch for 3 getting off to make a green smoothie and then forcing myself to do 1/2 hour of something constructive then back to the couch! Ha! This too shall pass ! Plus it’s -17 F or somesuch ungodly number !
I think your right. Feels like i'll never motivated again haha. But honestly i think that gets me down and trying to explain to people just how i feel. I can see they just look at me vacant. I just tell them now to look up about pred and side effects. You look after yourself. Xx
Hey Dappa. Glad you managed to see GP. Try to relax and go with the flow. Acceptance of what is, is half the battle; but this disease is such a roller coaster it is hard to keep up with the ups and downs both physically and emotionally.. It will get better. Best wishes. I hope you feel improved soon. x
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GCA back with a vengeance
Should I contiue with latest drop when feeling dreadful fatigue etc most days?
Low enough pred to get low cortisol symptoms? 
