Had an appointment with my Rhuemy yesterday, he's very keen to get me off the preds asap so I had lots to discuss with him about tapering, I was pleased that I had got down to 10 as he wanted but don't feel as good as I did when on a higher dose. Slight panic when told I'd be seeing another Rhuemy. Very different approach from her, she could have been reading the advice on this site. Don't race to reduce, listen to your body, certainly don't reduce by any more than 1mg, 1/2 is fine even a 1/4, go at your own pace, this is a long term situation, I could be on steroids for years, the aim is to be able to live as normal a life as possible. I said I hated the fat face and thinning hair. She said look at predesonole as your friend without it you wouldn't be able to function at all would you. So there we are I've been told how it is officially, am so depressed, crying now.
Rheumy appointment: Had an appointment with my... - PMRGCAuk
Rheumy appointment
Morning, you have found a considerate rheumy with empathy and knows what she is talking about....they are few and far between......you have done well to lower to 10mg by now....follow her advice and things should go well....she knows as we all do (wish I had years ago) it is not a race to zero.....slowly, slowly wins the race....have a nice weekend....good luck and keep us posted....
Thanks, though I preferred bouncy tiger Rhuemy, he helped keep me in denial. Sun shining gardening today, have a good weekend yourself!
That's amazing! Do you think PMRpro is moonlighting?
Hi Chris, you've been told how it is from a Rheumy who knows. Of course, you are upset, as you see a long road ahead. But you will adapt and adjust. Try to see PMR/Pred as a couple of companions who are walking along this road with you. Soon enough, you'll only notice them now and then when they demand attention. But you will adjust and there will be an end to the road.
Thanks teesher, though at 75 and if it takes years, I can't see me running about competing with my dogs, that's the thing perhaps I should give that thought up for good and find something less strenuous, life changing but feel guilty being sad as so many people are a lot worse off than me.
I really understand how you feel, I could have written this myself. I think the fat face is the thing that gets me the most every time I walk past a mirror I could cry, people will say that it shouldn’t matter and that it’s better than the pain which we know it is but it doesn’t really help does it? 💐
I think it's because we've lived with the same hair/face for so long. I hate my hair it doesn't feel right and I have no control and it makes me look so much older.
Not only that, the hairy chin!!!!!!
No one gets to see my fat face if I can't move and live some sort of "normal". I'm never keen to take meds but feel anxious tapering with a dr who seems intent on reducing me to zero. I continue to think I have control' which helps, but truly I'd pay good dosh to have a Rheumy like yours.
Ps having re read that sounds like I'm being harsh towards your original comment. I do understand and feel your pain. Steroids are a double edged sword! Keep smiling!
Hi,
Yes they are a double edge sword - but what powerful drug isn’t!
But at the end of the day the good side invariably outweighs the bad.
I’d probably be completely blind if it wasn’t for Pred and a switched on young Ophthalmologist!
Hi,
The realisation is hard to take sometimes. But surely better to know the truth at the beginning than to be continually feeling a failure because you haven’t been able to reduce as quickly as some less enlightened doctors would like you to.
Yes it is a long term illness which freaks out many people initially, but it is manageable if you and your doctor work together. Your Rheumy is correct - look at Pred as your friend not your enemy- it’s giving you a lot (not all admittedly but a good percentage) of your life back.
Could be a lot worse!
I liked being an emu Dorset lady, burying my head in the sand would also solve the fat face problem 😊
I know we all worry about the face fat - but it does go away. As for burying your head in the sand - don’t! Just think of everything you’re missing😉
"I preferred bouncy tiger Rhuemy, he helped keep me in denial"
which really isn't a lot of point is it? Had you continued to reduce as he wanted - you would very soon have been back where you started. I assume when you went for your original referral you wanted something done about your PMR symptoms and with them you couldn't do anything with your dogs. Now you have seen a very realistic and sensible doctor that most of us would be delighted to see.
I know it is hard - but PMR doesn't always last years but no-one can tell you how long. I've had PMR 14+ years, which is very unusual - but it certainly doesn't stop me living. The atrial fibrillation I have is far more inconvenient when it decides to have a go. But it is far less of a problem when I'm on more pred - at 9mg it is pretty much absent, at 7mg it is a pest, So cardiology and I are happy at present with that extra 2mg - the 2mg the rheumy is less happy about.
I don't know I could do showing of dogs (from what I have seen at least) but I doubt I'd ever have had the foot dexterity anyway. But with pred on board you can at least WALK your dogs in relative comfort. It is very easy to forget how painful and limiting PMR was after some months on pred - a little flare now and again is sometimes not a bad thing!
How long have you been on pred? Sometimes it is the PMR that leads to hair loss - mine fell out a lot, there was hair all over the place before pred. It usually grows back, mine did. Until the rheumy persuaded me to try methotrexate - then it came out in handfuls! I only took it for 4 weeks, it has taken 2 months to stop falling out! But since it was pretty thick it isn't too bad and finally looks like hair not a loo brush 
And the fat face? As you lower the pred it will improve - and you can help it along by being really careful with carbs. OTOH - it keeps the wrinkles at bay 
Here's a thing she said which I haven't heard before. If I get an infection, as I have no immune system I should double the dose of pred I'm currently on, but not for more than 3 days otherwise my body will be used to the higher dose and I will need to taper back down.
Yes and no-ish. If you have a severe infection you may well need a bit more pred but doubling it seems a bit OTT at higher doses of pred, lower doses, fair enough. Three days is a bit conservative - most rheumies say up to a week or even 10 days is OK to not need to taper.
But everyone is different and if that is how she likes it - who am I to argue. Though I would argue that with a moderate dose of pred our immune systems are still working some. I get no more infections than I did before pred and I am not the only person who says that. When I do they are less noticeable - because of the antiinflammatory effect of the pred I assume. In fact, sometimes I have to think hard to decide if I DO have an infection.
Ohhhhhh, no more tears!!!! This too will pass... xxxxx
"A pearl is a beautiful thing that is produced by an injured life. It is the tear [that results] from the injury of the oyster. The treasure of our being in this world is also produced by an injured life. If we had not been wounded, if we had not been injured, then we will not produce the pearl." — Stephan Hoeller
Sounds like you've hit the jackpot with your new Rheumie! You might not think that but you have, you can now relax and follow her advice and your hair and face will come back to near normal eventually, in the meantime try not to be anxious about it... Hope you feel better now you've 'let it out', you will get through this.
O bless you
It does get better I promise
You have a excellent Rheumy so in that respect are very lucky
Just learn to love yourself and don't feel guilty about not getting things done
Its a long journey so go with the flow
Your new Rheumy has obviously landed on the wrong planet, rheumies like that just don’t exist.
Don't tell anyone where she works or we'll all be queuing up to see her !
She says one more blood test and appointment just to be sure then me and my GP will manage my tapering fine between us. Any probs give the office a ring, can't argue with that.
Where abouts are you Chris? I want your Rheumy!!!!!
I'm on the northwest Cumbrian border, they have clinics in three hospitals, I've been to two of them, so far been seen on time for dexa scan and other things plus Rhuemy consultations, staff exceedingly friendly, I go expecting everything to be chaos as per the medja but so far so good.
Sadly no where near me then! Hang on to that Rheumy. She is gold dust.
Unfortunately she is signing me off to my GP to taper as 'I know what I'm doing' and me and my GP can do it between us, I do have the telephone number of her office for emergencies.
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