Hi there. I am newly diagnosed ( June 2017) with PMR, having endured deep pains in both thighs for about 2 years. Within approximately 4 days of taking 15m Prednisone, I felt amazing, pain free and full of energy. However, my skin is so fragile it bruises it years at the smallest knock, so have been struggling to lower my steroid dose. I have reached a plateau dose of 7mg, with a bearable resulting amount of discomfort. I am suffering extreme tiredness and hot flushes day and night which are worse than anything the menopause threw at me! I'm irritable, clumsy and feeling rather low. My husband is not unsympathetic, but says I shouldn't try to fight this, that I should just endure this and make the best if it.
I'd really like to talk, do you know of any groups who meet in West Sussex? Thank you for reading this time.
Would not advise that you push yourself down to 7 mg this early in the cycle. With prednisone, one bruises easily. We live with that. What you need to do is temper the inflammation and at this stage only prednisone and time can cure that.
Hi Liz
I started in September 2015 and now just dropping to 11mg. I think you have dropped way to fast. I'm on the slow side but you are not controlling your symptoms. This is not a race you must control your symptoms. Hot flashes fatigue and thin skin is very common. I came home and had a huge chunk out of my shin. Don't even remember bumping into anything.
Good luck mariane
Thank you Daniel. Am complying with GP advice to reduce 1mg per fortnight. Obviously this is too quick. Should I ask for referral to rheumatologist? Really I don't feel well. Any news on local groups meeting in my area?
Thank you for your advice. Feel quite disheartened currently.
Liz, you’re not alone. We all go through periods of despair and that’s why this forum is so valuable. As a point of interest, I was dropping the rate of between 1/2 and 1 mg per month. It took me nearly 2 years to get to 0 mg. When I found is that the doctor’s advice is really broad and generic. Each of us is different, each of us has to take responsibility for balancing increases and decreases in prednisone relative to the ebbs and flows of our own inflammation. And if you push your tapering too fast…well, you will know very quickly that you pushed it too fast.
It’s a journey and not a pleasant one. In time, I think we find a rhythm and learn to adapt.
Daniel is spot on. We are each different yet similar. 2 drops prior I suffered extreme exhaustion but it passed. I tend to overdo and pay for it. You have to pace and listen to your body. I need to stabilize for at least 3 weeks before another drop. This last time it was 2 months. Trust your instincts this forum is wonderful for advice and comfort but mainly for great advise and knowledge.
Mariane
Please don't feel bad. You've discovered Pred helps the pain which is fantastic. It sounds as if you're tapering too low and too fast if you only started in June. I started in May at 25mg and am only just down to 18mg. I'm taking it very slowly as I don't want a flare or return to the incapacitating pain. You do have to pace and rest as well as being active. My advice would be to return to a dosage that works and maintain it for a month or so before going for the 10% reduction slow tapering method you'll find on the Polymyalgia page on this site. Hang in there - you are not on your own!
Thank you so much for your time in replying. I am taking it all on board.
Thank you so much. Am listening to you all.
Thank you. Was feeling on my own. Glad I found you all. Will rethink my regime now.
What a sensible husband you have! He seems to have seen the light!
To have reduced as fast as you have to 7mg is not necessarily a good idea: there is no virtue in taking a dose that is too low. What was the lowest dose where you felt as good as you did at 15mg? If you persist at too low a dose you are allowing the inflammation to creep up on you again. The fatigue and flushes are part of PMR - it is an autoimmune disorder and fatigue is an almost inevitable part of most of them. The flushes can be PMR and pred - a double whammy.
If you got to this page you will find links to all our resources:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Read the Bristol paper for a far more reasonable approach to tapering - from a top expert so your GP may listen better. The dead slow approach Celia has given you the link for is "our" version but being used by a research group in Leeds in a clinical study - but the GP may not be as cooperative about using something he perceives as "off the internet and patient's ideas". It works - no arguing with that!
This takes you to the NE charity site - and there is a map of the UK, click on it to get a list of support groups.
http://www.pmr-gca-northeast.org.uk/
There are groups in Brighton and Worthing - the people who run them are good.
The irritability, clumsiness and depressive mood are all parts of PMR - and pred probably adds to it. But hold on to the fact that this too shall pass. But you have to do your bit, you have to learn to pace yourself and rest appropriately. It isn't just taking the pred pills. You need a high enough dose to feel better and get back to relatively normal living. And that means you have to take some of the downsides - like the delicate skin. That can be helped some by moisturing - Diprobase or Doublebase products are ideal and can be had on prescription if you have a decent GP. And avoid soap or any product that foams - it strips the skin of its natural oils and adds to the fragility. Unless you are a farmer or miner you REALLY don't get that dirty during the day - just water is fine. The only soap that gets on my skin is shampoo - every 2 or 3 weeks. And no, I don't smell and my hair is clean.
Eileen is our Guru on all this and her advice is extremely knowledgeable and informed. The only other thing I'd add is that I invested in a long handled natural bristle body brush. Gentle long sweeping strokes towards the heart, along legs, arms etc (there's a YouTube demo of course), before a shower, seems to get rid of all those irritating scars much faster and invigorates the lymphatic system. The very idea may freak you out but I thought it worth adding into the mix. I'm painfully sensitive pale skinned, bruising at the drop of a hat, so quite a good guinea pig..
liz76821, we are all different and each individual case in different. I am PMR pain free and very active on 12.5 tapering from high of 30 in the spring. My skin is very thin, bruises I always have bands aid on my hands and arms. I have night sweats, use 2 or 3 T shirts every night. But if and when I get to 10 mg, my taper is going to be the full DSNS taper, if I get any PMR pain, halt and bump up the dosage till PMR pain free. This is not a race, the Rheumy may think so, but they are not living with PMR pain, take your time. Find the dosage that you are comfortable with, then taper slowly. Good Luck think positive.
Hi Liz76821
welcme to this forum -I'm sure you're going to find all the support and information helpful even if it is a lot to take in initially.
I don't know where in West Sussex you live but there are groups meeting in Brighton, Chichester and Worthing. I attend the Worthing group which meets on the second Tuesday of each month. We meet in the pub at 1100 ( not 11.30 as stated on the website) and there's usually 6-10 people present. I've learned a great deal from sharing with others and it definitely reduces the sense of isolation that goes with this complex illness. You'd be made very welcome at our group which meets next Tuesday 10th October at The Sussex Yeoman Pub, Palatine Road , Goring by Sea Worthing BN 12 6JN. Full details of the other 2 groups on the PMRGCA website at
www.pmrgca.co.uk Look under the groups section in the menu.
With best wishes
Linda
Thank you for your support.
Thank you for your kind reply. I'll certainly try and get there, but Tuesdays are tight for me.
So kind Celia, thank you.
Eileen, thank you for your kind advice. I haven't been pacing myself, have been fighting the symptoms, both physically and mentally. Need to embrace this time in my life and listen to my body.