Until then I was fit healthy (for my age) and active. I could still walk reasonably and ride my bike. My BP was good and I wasn't overweight.
The GP I first saw was excellent and straight away said she thought it was PMR, did blood test immediately and started me on 15mg of pred as soon as the blood test result (83 ) was back. I had regular blood tests and after and about a month later a differnt GP in the practice reduced the pred to 12.5 (inflammatory marker was still 10)
I felt very unwell on the steroids and was referred to Rheumatologist to see if there was any other treatment. She put steroids up to 20mg for 6 weeks - I did feel better on 20 and the violent headaches I had been experiencing stopped. She said then to reduce to 17.5 for 4 weeks - with a plan to reduce by 2.5 every 4 weeks. I feel she was very thorough - and she has phoned me several times to check on progress - but next appointment to see her is in June. I do have a phone number to rheumatology help line for advice if necessary.
Am seeing the GP regularly (the first one who I think is very good) mainly because of problems with side effects from pills - and I asked her if I should try slow taper down to 15 as I didn't want it all to flare up again and have to go back up. I showed her the 5 week slow taper plan. She was interested but said it wasn't necessary - she also said it wasn't necessary now to do another blood test first.
I have not coped at all well with the whole range of pills. Steroids have made my BP shoot up and now on 3 types of pills for that (causing me bladder problems) but bp still very high. The pills to protect my stomach and bones all upset my stomach ( diarrhoea, bloating, pains) - GP has tried several different types. And I have put on weight - which I am desperately trying to lose because I know that steroids can also cause diabetes.
I am very shaky (side effects of steroids) and walking is terrible - legs feel week and wobbly and I need a stick to balance. But am only in pain if I stand up for long (ie cooking or ironing). I spread housework over several days, limit shopping to short trips and make sure I rest each day.
I am now due to cut down to 15mg - I can understand doctor wanting me off steroids asap because they are causing me so many health problems - I have read on this site that the lower the pred dose the slower the taper.
In the wisdom and experience of the group is the sudden drop of 2.5 from 17.5 to 15 OK or too much??
Many thanks xx
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Strippy
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"I can understand doctor wanting me off steroids asap"
And that encapsulates the problem I suspect. You can't "get off pred asap" - you will need pred as long as the underlying autoimmune cause of the inflammation that causes the symptoms we call PMR is active. No-one can tell how long that will last - but we can tell you it is more likely to be years than months. Pred cures nothing - nothing will - but is a management strategy to keep the inflammation under control to provide a better quality of life in the meantime. There is no replacement - not in the UK at least - and while in some patients there are things that sometimes help reduce pred, there are no guarantees and mounting evidence they don't REALLY help in the long term. If they did, they would use them from the start and they don't.
SHE may think things aren't necessary - but I know a lot of people who would disagree, mostly patients who have actually got the experience, but also the better rheumies we know. I think the first mistake was making you start to taper after only a month. You say "inflammatory marker" - which? ESR or CRP? If it was ESR then 10 is a low level, it is never zero. If it was CRP, that was probably still high. However, that was redeemed by the rheumy and 20mg which you acknowledge helped - but I wonder if SHE missed a GCA diagnosis - the severe headaches you mention could well be a symptom that it isn't "just" PMR.
The 20/17.5/15 stages of the taper are fairly standard - it works for lots of people, it is too big steps for some. It isn't wrong per se - it might be too much for you. But you only find out by trying.
Your raised BP may not be just pred - in fact, it could be not enough pred since if all the inflammation is not controlled, that itself can lead to high BP. And it may be you aren't on the best medication for YOU.
Let's look at the weight gain and steroid induced diabetes - cut your carb intake drastically, you can now Christmas is over!! Start by removing processed carbs, that immediately cuts simple carbs and salt, both of which contribute to weight gain when on pred, fluid retention adds weight too. Also cut out added sugar and limit fruit and root veg which are also sources of carbs. You are looking at taking out flour products, baked goods of all sorts, pasta, rice, and eating protein, meat, eggs, cheese, above ground veggies and salads. I find this site very easy to use to learn the basics:
A normal healthy diet doesn't cut the mustard with pred - it must be lower carb, how much lower varies, some of us really have to get very low, others are luckier. This will also help reduce the risk of steroid induced diabetes - some have even reversed Type 2 diabetes using the same approach. And it is an anti-inflammatory diet - carbs, sugar, are pro-inflammatory so reducing them should also help you overall in getting to a lower dose of pred.
If the alendronic acid for your bones is causing stomach problems - ask if you can have something different, if necessary the annual infusion of zolendronate. You say the doctor tried several different types - of which and what?
Most of the side effects of pred can be managed or mitigated when you know how but to help we need to know more detail about the medications and their effects on you.
Thank you for all that - and for the link to low carb diet. I have seen that before and tried to follow . My general diet is healthy - I don't ever eat UPF's - and I love salad things and fish or chicken - but have to admit to occasional piece of cake 🙄Now Christmas over will have to cut it all out.
It was CRP - and the Rheumy said pred shouldn't have been reduced until 'normal'??
As to meds; first Lansoprazole, then Pantoprazole, then Omeprazole 10mg and now Omeprazole 20mg
All have upset my stomach - Rheumy said I don't need to take any 'prazole' things but Doctor very wary of that she did reduce to 10mg of Omeprazole but I then had acid reflux (causing sore throat) - so it was increased to 20mg. I also take Gaviscon before bed.
The Adcal upset my insides - even with half dose (bloating and diarrhoea) , they stopped that and I just had vit D, now have thiCal-D but that upsets me too. The alendronic acid causes violent diarrhoea the day after I take it! I will ask about something different - also going to ask for dexa scan to see if any are necessary.
When I see GP she says problem is we don't actually know which is the problem - or just a combination of them all - and it might be the pred which we cant do anything about
I think I would feel a lot better if I didn't feel so shaky - which I am sure is the pred.
But hey ho - I am not in a lot of pain like some poor souls. And I can still get around 😊
If that was CRP - yes, high and a bit longer on the starting dose was called for.
Trouble is, the UPFs are the main culprit for most but you probably wouldn't describe bread, pasta, rice or root veg and spuds as even PFs but they add a lot of carb to the diet. Snazzy and I both needed to be down to under 20g carb a day to lose weight - maintaining is easier though. That really isn't much at all - an apple or a banana took us over that before we included any from veg!
Adcal is often a problem. I would concentrate on getting enough calcium from diet - an ounce of hard cheese is a large part of what you need for a start and my 1/4 litre milk just in tea is about a quarter of the RDA, that is all I use milk for. Get a plain vit D supplement, cheap as chips at the health store. I would drop the AA for now, you won't crumble in a month or so. My mantra was "no dexascan - no AA". Risendronate is often better - sosts more which why it isn't offered first. Then zolendronate - an annual infusion.
She is right you can't tell which is doing what - and that is why I get so fed up with them writing half a dozen scripts and starting it all at once, No need for it at all. Start with the essential, pred, for a couple of weeks and add the other stuff one at a time with AA last. Omeprazole is a common problem and so are other -azoles, all the same class so similar adverse effects - and it is something I have NEVER taken because of pred. Use something if you NEED it but otherwise take the pred with food. Include yoghurt, many only use that and it is good for calcium too. She can try an H2 inhibitor - cimetidine or famotidine which are coming back into favour as the downsides of PPIs are being recognised. Does the same thing with acid but in a different way and often fewer side effects, you can get it OTC if she won't try them. PPIs may be more of a sledgehammer but the H2 inhibitors do all you need.
Does the shakiness improve through the day? Some people took pred at night, slept through the worst and were markedly better by morning.
Many thanks for all that - you confirm what I have thought about all the meds. that I am currently taking. Thanks for suggesting alternatives.
Unfortunately I cannot eat cheese or cream (they have always made me sick), but I have lactose free milk in tea - all day.
As to shaking - it definitely gets much worse soon after I take all the pred in the morning! I usually take it all after breakfast - shaking lasts all day really but I could try taking it after dinner instead - thanks
Have been reading more about carbs now from that link. I was surprised that things I thought of as healthy - ie an apple - are quite high in carbs. I often have a baked apple with some raspberries or other berries and nuts for lunch - thinking it was really healthy. A new years rethink of diet called for!!🙄
Yes - SnazzyD often says, healthy isn't the criterion here, it is low carb which really changes the boundaries.
Is lactose the problem? Should live here - very little that doesn't come as a lactose-free version. It is very common here, as is coeliac disease up here in the mountains and we have the biggest g/f manufacturer in the region.
I gave up on recipes years ago - probably makes my diet boring but CBA ... I used to be a hobby cook but the family could barely agree on a dish they would all eat so I gave up. Cook for me and I will eat pretty much anything except liver and kidney!!! Lots of things here don't have cheese - you could even come out with me for pizza made without cheese!
I didn't say CARB-free!!! The local dairy produces a lot of lactose-free versions of milk and soft-cheese and hard cheese is pretty well lactose-free anyway. My daughter is vegan and sometimes takes vegan "cheese" to the village pizzeria to add to her pizza,
My husband was the worst of the family for eating, especially after chemo in his 40s which destroyed his sense of taste. Understandable perhaps but he wanted the food he'd eaten as a teenager, before I started cooking for him. OK in the UK maybe where pies, bacon and sausages were easily available but the first 2 don't exist here and local sausages are wonderful but very different!
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