Trying to reduce again

[Poppylop]

Hi all, went to see the rheumatologist again Tuesday after another flare at 30mg, I saw Professor Luqmani at the Nuffield, really nice man, very friendly and understanding of all the side effects I've been having. He wants me me start reducing again, but he's saying the same as the other rheumatologists I've seen, 5mg a week so I will be at 10mg in 5 weeks then he will re scan me, I told him I think 5mg is too quick and that's why I keep having the flares at 30mg, he said he didn't agree and said, and these were his actual words "my worry is that we are poisoning you with steroids" I looked a bit shocked when he said that and he said he wasn't being over dramatic, he actually thought that. I have started reducing but I'm doing it by 2.5 for a week then I will do another week although I got totally confused what I had taken yesterday as I split my dose and I think I took 40mg instead of 32.5, hopefully that won't make too much difference. He also told me that my nuclear antibody blood test wasn't quite right and could indicate that I have lupus so had to have more blood tests, also had a dexa scan but won't get results for 5 weeks which seems a long time. I also had my blood sugar tested this week, the gp rang and told me I was just over the normal limit, it had leapt quite a bit since it was last done in Feb, she said I have to cut out all sweet stuff to make sure I don't get diabetes, I'm so fed up about that as I don't drink or smoke, I just love cake and chocolate, so I'm going to be miserable for a while(my poor husband😁), I am away with a friend at the moment, we've already had afternoon tea and pudding after our evening meal whoops, I will have to try to be good when I get home, sorry for the long post x

[Yellowbluebell]

I can feel sympathy over the loss of sweet stuff. I have cut my carbs which was hard but still miss sugar. Like you i dont smoke but do have the occasional drink. Your mistake over pred wont make much difference for just one night. I personally would taper as slow as i could to avoid the flare at 30mg. I would stay at each taper at least a couple of weeks. Others will be along in a bit to give you more advice. Good luck. YBB

[Poppylop in reply to Yellowbluebell]

Thanks for your reply, I think I need to get one of those dosset boxes because that's the second time I've taken too many 🙄

[Yellowbluebell in reply to Poppylop]

It might make sense to. My OH has a hige amount of meds and he uses one to avoid mistakes. They are kot usually very expensive and you can just set them up every week. YBB

[PMRpro Ambassador]

I imagine he knows you WILL flare as you reduce and by telling you to reduce fairly fast he is aiming to reduce the duration but to do it safely - 5mg per week is a normal reduction plan except not for tapering to titrate the drug dose. I think he is being a bit unfair asking you to do it over xmas but it has to be done sometime. xmas is also part of the reason that the tests will take 5 weeks - labs are run by humans and they want time off now too, some labs shut down to an emergency service from the 24th to after NY, there are 3 or 4 bank holidays there, depending on where you live. These blood tests take a few weeks any way as some are done in steps - the result of the first step dictates which second step is taken and so on. They are often things that are not common and are saved up to be done in batches once a week or 2 weeks - having several samples running at the same time reduces the chances of errors as well as costs - the same controls and standards are needed to do 1 test as 20.

Ask a patient to come for a hospital appointment at this time of year and the chances are they will refuse - and at the least will be amazed the staff work at all. I know, I have handed a patient an appointment for the 24th and they thought we'd all be partying! And no-shows were always greater if any patient was surprised at when an appointment was timed - weekends, evenings have posed problems when used to reduce waiting lists. OTOH - if you are happy to be seen in these holiday periods you may well get an appointment if you ask and tell them you'd come on Dec 25th if you could!

[Yellowbluebell in reply to PMRpro]

OH has had numerous appt at 7 and 8 at night and i have had tests done on a Saturday. I take anything i can get and lkke you say would quite happily suggest 25th dec if it meant getting seen sooner.

[PMRpro Ambassador in reply to Yellowbluebell]

I still don't get why some hospitals close departments for BHs - nurses and paramedics work as normal - and they are extra busy!

[Yellowbluebell in reply to PMRpro]

I know! If they are in anyway just run clinics.

[Blearyeyed]

Keep us updated on your progress , especially the results from your ANA bloods , as Lupus or any other condition that can be confirmed by this could be a reason for the added side effects your having.

I assume he is hoping that the increased dose you had been on was just meant to help quickly reduce your inflammation and Flare and so reducing from it at 5mg a week would work as it does for many because you had not been on it for very long .

Unfortunately , it's the tapering for Medical Necessity that we all wish we didn't have to try to do at Christmas with the normal added stress and activity going on.

You are definitely going to have to leave all Christmas chores to others even if you don't want to and keep concentrating on You and Your Health until this is settled.

Tapering and dealing with this Stress is going to need all your Energy.

If it is Lupus as well as PMR , it is likely they would give you Pred as the firstline drug to manage it as well until they can offer you a steroid sparers anyway so at least you have started on it , but I can understand how his comments are also a bit confusing.

Did he discuss options like Methotrexate or Azathioprine ( if it's Lupus or something similar) to help you taper and manage the Pain , as it's all very well stating that the steroids could be poisoning you , and for some Patients steroids aren't the best option at higher doses , but if you aren't controlling the symptoms you do need help from something else.

As Pro says , things can be a bit slower at Christmas if you have lab tests or GP appointments , but the upside is that you can often be fitted into an appointment that someone else has cancelled in the weeks over Christmas with a Specialist , handy, if you are struggling , and , although Christmas is important in general , while you are still waiting for help your health is the priority , so do ring and get that help if you need it.

[Poppylop in reply to Blearyeyed]

He didn't discuss any other medications, luckily I won't need to do a lot over Christmas, since my mum passed away 3 years ago Christmas hasn't meant the same to me, she loved it and used to stay with us, so this year me and my husband have decided to go away Christmas eve and come home boxing day, we are staying in a lovely hotel in the cotswolds with a swimming pool, so I'm going to have a very relaxing couple of days, which I'm really looking forward to as we will be very busy at work beforehand as I'm a florist.

[Blearyeyed in reply to Poppylop]

Fantastic choice , and just what you need . Christmas can be a hard time if you have lost the people you cherished spending it with , so making the choice to do things differently and have a trip away , doing things quietly and just cherishing some time relaxing with your partner , or even just cherishing yourself on a trip on your own , can be the best gift you can have. Good for the Health too.

[PMRpro Ambassador in reply to Poppylop]

Enjoy it and make the most of it - once we started going away over xmas it was such a relief not to have to fulfil other people's expectations of us over something that meant very little by then.

I've had a load of aversion therapy for xmas too. Just can't get my head around it at all now. When the children were small we came here from Germany to ski over xmas so it was rather a shock to the system when we went back to the UK and I was expected to "do" xmas in a particular way! Not helped by the recipient complaining how much she hated it anyway and she wished it could be cancelled. Being awful people, we took her at her word which she accepted relatively happily.

I loved being away but now we are usually alone here, which is the same as being away really. The 24th we have to eat at home (steak or raclette) as nowhere is open but now the 25th tradition is at the pizzeria, the 26th is the nearest to an xmas dinner at the hotel in the village which reopens then. This year our daughters and grandchildren are coming - still trying to work out 2 night's meals for 4 omnivores and 2 vegans in a tiny kitchen! I'm hoping they'll bring some vegan cheese for raclette for one