Didn't have a great night and this morning was pretty bad. Woke with an aching throat again, arms welded to my sides and left leg very painful. Thought about the advice on here and decided to take 20mg today. Waiting around for doctors seems to just add to my troubles so hopefully I won't get told off for not consulting first!
This afternoon my throat has stopped hurting and pain is dulled slightly. Will see how I feel in the morning, but I'm not holding my breath for a miracle. Maybe I'm expecting too much or I'm just too impatient for a pain free experience. It's a long time since that happened.
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tazman3
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You will only get relief if you are on enough pred - and for some people it may take a few days if not longer. And I have just posted on another forum about sore throat possibly being a presentation for GCA. Maybe your doctor had something in mind when she wanted you to start on 30mg?
She wasn't actually wanting me to start on a high dose, she just said that the highest dose she would start at was 40mg. That's when I freaked and she told me to calm down! I told her about this forum and all I had read. She was ok-ish about it and asked me what I was expecting to start on. I said 15mg and she said ok. Just like that. My throat is not sore or red it just aches when I swallow and it's been like that for a long time. Maybe I just talk too much!! She thought it was possible that it was overlapping the oval shape on the diagram of symptoms.
I do admit I am hyper at the moment and my anxiety is on the ceiling (I take beta blockers so I can calm down). She obviously picked up on that but she seems open to working with me. Completely opposite to the first two docs I saw. She examined me thoroughly, including my head and temples. I think if she suspected GCA she would've been more forceful. We did discuss it along with my fear of osteoporosis. Or, I could be in complete denial. Time will tell.
I go back in a fortnight and she is going to arrange for more tests and supplements. She did mention Vitamin D infusions?
Again, thank you for the fabulous support and friendship for strangers.
When I asked her about osteoporosis, she said that I might need extra calcium/vitamin D. I told her that I take supplements and she said something about infusions. I will ask her when I see her. I've probably got it wrong - par for the course with me at the moment.
Calcium and vit D supplements are normal. The infusions she refers to are almost certainly bisphosphonates or denosumab/Prolia which trap caclium in the bones and so increase the bone density. They are not innocent drugs and have considerable adverse effects so should be kept for when they are needed. Prolia in particular has been recently established to cause problems with rebound speedy loss of bone density when it is stopped so if you start on it, either you must continue for life or switch to taking the oral bisphosphonates which the Prolia was expected to replace in the first place.
When used for more than 2-3 years, there is a risk of bone forming which is different in structure, with cracks forming which can cause them to be more fragile and to fracture spontaneously. We have had a few people on the forum who have had fractures which do not heal. They can also cause considerable problems with dental problems and many dentists refuse to treat patients taking bisphosphonates.
Only in my specialist subject: PMR and GCA and anything to do with it!!! After 15 years and over 10 years on the forums and studying the intricacies I do know the odd bit I hope
Well I'm extremely grateful for your knowledge and experience. It's just a shame it has to be in this club that nobody wants to be in.
On a different subject, I love spuds and bread - wholemeal of course. I know I am going to have to give it up, but is there anything to substitute? I do watch what I eat and have fasted every Monday for years. I've used the 5:2 diet very successfully, but have eaten some bread and potatoes in between fast days.
If you don't have a weight or pre-diabetes problem then you may well be able to continue to eat them in moderate amounts. Personally I find it easier to just keep them for special treats in small amounts and not look for substitutes in that sense.
Well I've never heard that before. It's baked potatoes I will miss, I like to have them instead of chips etc. I suppose I could just have a little one instead of the monsters I usually have....
Forgot to say - allowing the potato starch to cool properly changes its nature and how the body digests it to slow down the absorption. And as squashie says - freezing makes better chips and roasties...
New potatoes have a lower glycemic index to start with, which means they release energy more slowly. If you boil, leave to go cold/freeze and then cook they are lower carb than "normal" potatoes. I boil with skins on and then put in the oven to roast.
I stopped eating bread and potatoes a month ago and have now lost 14 pounds. I am happy to be back to my trim self. I do eat a little bread but in the form of wraps packed with hummus and salad. I do eat rice snaps from Tesco or cold oats with unsweetened almond milk. D
tazman3, if you parboil your spuds (depending on type between 2 and 5 minutes) , dry them thoroughly, let them cool or even pop them in the freezer for a bit, and then roast them, they are not only better for you but they give you a great crispy outside and fluffy moist inside.
Give them a good shake in the drainer and rough the edges up. They go lovely and crispy then. Never failed for xmas dinner and have to make more since fluffing them.
I am roughly 18 months into my PMR journey. Firstly, if you don’t don’t mind, I would politely suggest a deep breath in and a very slow deep breath out. I have a 40 year background in healthcare and a mother who had PMR but nothing prepared me for this journey! However, one thing I have learnt over the last 18months is that nothing is certain and not to panic when things don’t go according to your plan/expectations 🤪.
PMR pain can pop up all over the place, but the cause is the same as is the treatment. You can’t fight it, you can’t have expectations and you have to give it time and you almost have to play with it. Miracles don’t happen!!
So, you feel like shit for a day. Would you be so cross if you had the flu that laid you out for a week? PMR, It’s inconvenient, it makes us feel like shit, we don’t understand it, we feel we can’t control it, we feel the professionals don’t understand us, we often look far better than we feel, we didn’t sign up for it, the medics try and get us to take more drugs because they can’t cure us with one simple prescription, it totally changes our lives, and we don’t know how long it’s going to last, but at the end of the day we have to take control and learn how to live with it. It isn’t killing us, but we definitely have to learn how to live with it.
In 18 months, I’ve had deathly fatigue, given up a career and taken early retirement, had swollen glands, torn ligaments, pains in places I’ve never had pains before, had to give up things I love (hopefully temporarily), broken sleep, hours in bed, had more doctors appointments and blood tests than in the previous 60 years, cried, hurt, raged and got thoroughly peed off with life, but finally I’ve gone and said I’m going to take each day as it comes, do what I can do, rest every day, push myself a little, enjoy what I can enjoy, learn something new, stand up for myself, eat well, drink well, love well, do what I love, not do what I hate and most of all have fun when I can.
Every day is a new day. I’ve started my 3rd reduction of Pred having gone back up to 10mgs in Jan after a massive flare due to ignorance. I’m now on 9mgs. I’m aiming to be on 8 by June when I next see the Rheumatologist. If I make it great, but if I don’t I’m not going to sweat. It is what it is!!!! But, having taken a more relaxed view of things I feel better than I’ve felt since my journey started. I’m doing more and am far happier than I was 18 months ago.
I really, really hope you don’t find this patronising, but somehow I just felt your angst. It’s really not worth tying yourself up in knots. Listen to your body. It’s asking you take note and care for yourself. Give yourself time. It will save you time in the long run. It’s a rollercoaster ride and there is an end, just try to enjoy the scenery on the way. Good luck 😀 xx
I really appreciate all you have said to me. Not patronising at all, in fact you are very intuitive! I know I need to calm down, but have been this way since childhood. Had a very anxious and depressed dad and a completely unapproachable mother, so no wonder.
I was expecting a miracle within hours. I read about people experiencing that and the doc was raving about how ALL pains would disappear. I do feel much better, but by no means frolicking like a new born lamb! My OA is still there, but I've dealt with that for a long time with regular hand/wrist injections. My shoulder bursitis is still there and I think that probably needs another jab. But, today I got out of bed without crying or rolling and the leg pain has almost gone. I think my body is just taking time to say hello to Mr Pred.
I listened to my body after my first dose. 15mg felt like it was nibbling at the edges with my throat pain going. The next morning it was back and I felt I needed to up it to 20mg. This forum gave me the confidence to just go ahead without asking the doc first. Each day I feel a bit better. I'm still exhausted so will carry on resting and studying my diet.
Today is my 4th day on pred so I must be patient I know. When I first suspected pmr I was adamant that I was not going to take it. Ha bloody ha, as if. No way could I carry on like that without it; every morning the pmr was screaming louder and louder at me.
I'm very grateful to you and everyone who has the knowledge and experience of this new world I'm living in, so thank you once again.
Thank you for your kind reply and I hope you are continuing to feel a little bit better. If the PMR was lurking for a while before really showing it’s hand to you, the tiredness will linger and you can expect good days and bad in that respect. You will know it if you over do it, which is tempting if you have a good day. As all the aunties on here will tell you, you have to pace yourself. If you haven’t read it already, “spoon theory” is a brilliant help on that subject. I’m sure someone on here will give you the link to it, but I think you can just google it. Goodness, you’ve had a lot to cope with in your life, but you have come through. Although you’ve been challenged with another hurdle, with all the help and support there is around for you on this forum you will be able to get a grip on your PMR. That feeling of empowerment helps a load. Hang on in there as it is very early days, don’t forget to rest and despite the awful weather at the moment summer is on its way and a bit of sun and warmth should help. Stay strong. Hugs to you. X
To everyone - Remember everyone's bodies are different! Individuals react differently to the same drug! I strongly believe (as I was told, early on in my PMR/GCA journey - 18 months ago) that most GP's are not qualified to recognise or diagnose these auto-immune diseases. This job belongs to a Rheumatologist, a 'highly skilled' and 'qualified person'. In my case, I self medicated headaches/neckaches with Paracetamol and then Co-codamol as the pains got gradually worse and during this time (as Dr. appointments. were scarce) I visited Accident & Emergency Walk-In clinics over about 6 weeks. (I didn't realise it at the time but the risk to me losing my eyesight (usually permanently) without 'steroids' was huge! I was offered an NHS rheumatology appt. with a wait of several weeks so decided to enquire 'private' - (for £175 I was quoted approx. 20 mins.) I had 40 mins. with the specialist - he diagnosed PMRGCA and prescribed 50 mg. steroids - which I began that evening/with a Temporal Artery Biopsy within 2 weeks of starting Prednisolone.
(I would ask everyone - bearing in mind the enormous risk of going 'blind' with GCA - what is more important in life to spend your money on than your Health?)
Finally, I would also strongly advise all to join a local support group if available (in the UK these can be found via PMRGCAuk) - it is a marvellous way for people to chat informally over tea and biscuits and compare their symptoms/problems and solutions and make friends, at the same time helping the Group in a small way, to not only create Greater Awareness amongst the Public but throughout the Medical Profession also.
"I strongly believe (as I was told, early on in my PMR/GCA journey - 18 months ago) that most GP's are not qualified to recognise or diagnose these auto-immune diseases"
Unfortunately that is not the view of most of the NHS even if many rheumatologists are of the opinion that we should see a rheumy at least once. My experiences with rheumies in the UK was bad - both of them, some 4 years apart. One didn't even twitch as she dx'd OA in my knee - of which there was no sign 14 years later. The other wanted it to be anything but PMR - a common experience I fear. One GP was pathetic, one was superb. And you have to get past the GP to see a rheumy - their diagnosis is what is important unfortunately.
Many of the people who use this forum do so because it is a virtual support group - as they have no access to a real-life one. There really aren't that many and without a car it may be impossible to get there. Plus, realistically, I'd suspect that the majority of members in the UK probably can't afford a private appointment - many are pensioners or if younger struggle to work because of PMR.
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going good so far
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Update on The Story so far
Toughest Pred reduction so far ..... any advice or tips please
