Rheumatologist Visit after 9 months

[Buchanan16]

Hi its been a couple of months since my last post and my mums skin flap has healed really well and thankfully apart from the usual bruises there have been no more incidents. She is looking well and has even lost a bit of weight which she is delighted with.

Our concern at moment is she is still feeling bit lightheaded when she stands up and gets a bit breathless when she over exerts herself. She had her vitamin B12 booster 2 weeks ago and we were hoping that might have helped but as yet it doesnt seem to have. Does anyone know how long it takes for this to work? We have mentioned light-headedness to the gp a few times and as her bp is ok he doesnt seem unduly concerned as it only lasts for seconds when she stands up then it passes.

As for the breathlessness could it just be sidw effect of the pred?

We are now tapering down to 13mg using DL 5 week taper which seems to be working really well for my mum so far

and our GP is happy for us to continue doing 1mg a month till we reach 10mg then we can discuss going bit slower from there on if need be which is great.

The problem we have now is we have an appointment with our rheumatologist next week the first since her GCA diagnosis and i know she isnt going to be happy with our slow taper as she was adamant we go 60mg 50 40 30 20 17.5mg 15mg 12.5mg then 10 and reducing every 2 weeks and only from 10 were we to go monthly. She is very much of the mind of getting of steroids asap and has already mentioned the steroid sparers to help us get lower quicker if need be. I will be taking DL tapers with me to show her as i do not want my mum given anything else as she is coping really well with pred and our slow taper. I would much rather just deal with our gp as him and all other gps at our surgery have been wonderful with my mum and we work really well together and he was one who suggested we only drop 1mg a month from 15mg and then from 10mg we drop 1mg over 6-8 weeks which suits us fine.

Unfortunately im not sure that will go down well at our appointment and im not sure how to approach it if rheumy insists we go quicker. The problem i have is my parents think she is the expert so she must know better and if she says drop from 13 to 10mg that must be right not realising to quick a taper could have detrimental effect on my mum and cause a flare which we want to avoid if possible. I feel my mum has done amazing to get to 13mg from 60mg in 9 months i just wish rheumatologist could see that to.

Anyway apologies you lovely people for yet another long winded post but once i start writing i seem to be unable to stop and find it very therapeutic to get it all out so thank you for listening and any advice on how to handle my rheumy appointment would be greatly appreciated.

Thanks again for being there and keeping me sane through these past months.

[DorsetLady PMRGCAuk volunteer]

It is difficult to go against Rheumy’s advice, but I think you have to say [politely] that you tried her approach and although it might work for [some/many] of her patients, it didn’t work for your mum.

You can say you discussed it with GP, so she doesn’t think it was just you making the decision without taking medical advice.

..and to be honest, at 86 your mum deserves good quality of life… so there really is no great rush to get her off Pred too quickly and make her life miserable.

Good luck…

[123-go in reply to DorsetLady]

Well said!

[Buchanan16 in reply to DorsetLady]

Thank you DL and those are my thoughts exactly my mum is 86 and i feel f we can continue reducing as we have been without her taking a flare we are doing well and it is only 9 months after all which is no time at all.I will be polite and listen to everything she says but i do feel that she has left us to deal with it so far with support of our gp and as its all going well im hoping she will let us continue to do so without trying to change anything.

[Mfaepink1973 in reply to Buchanan16]

I’m sure others will give you advice regarding the rheumie. The B12 injection should have taken effect within hours, I work in a care home and when any of the residents have a B12 injection I always liken it to them having had new batteries put in! If this hasn’t happened with your Mum maybe it’s worth a GP visit. The dizziness could be an inner ear problem so you could get that checked out while you’re there. Your Mum is lucky to have you in her corner.

[123-go]

I would just like to say that your Mum must feel so reassured by your support. You are doing a good job.

Just a thought- I wonder if your Mum has a build-up of earwax that could be causing the lightheaded feeling when she stands???

Keep up the good work and remember to look after yourself too. 🙂

[Buchanan16 in reply to 123-go]

Thank you so much for your kind words it can be hard going sometimes worrying that you are doing the right thing but i have my brother and sister close by for support which helps.Im currently recovering from bad bout of covid where i had to stay away from my mum for cple of weeks and which seems to have left me feeling extremely tired when i do anything. Its given me a small taste of what you lovely people must suffer on a daily basis.

Ile mention to my mum about her ears and mayb get them checked next time we are at doctors.

[123-go]

I applaud you for continuing to support your Mum while feeling poorly yourself and pleased to hear that other family members are helping out.

Before your Mum’s appointment next week it will be a good thing to write down beforehand the questions/points you want to make so that you don’t forget anything. DorsetLady has made excellent suggestions in her earlier reply regarding your approach with the rheumatologist. If the rheumy is adamant re tapering, do ask if she/he will work with you and re-iterate your concerns. It’s frequently advised here that ‘the lower the slower’ is the way to go when doses reach single figures particularly. If you hit a brick wall ask politely that, for the record, your concerns are stated in the appointment follow-up letter. I know you wouldn’t make this sound like a threat 🙂 but simply to act as a reminder for you and your family of what has been discussed.

Please keep us posted and come back at any time. We’re all behind you.

[pata63]

I inject B12 myself, about monthly. 1mL hydroxocobalamin in my leg. I did it this morning on day 33 since my last B12, so a little longer than usual. It takes effect within 4 hours and I can feel the lift in my energy. I was taught to inject myself because for over a decade I was wintering over in remote areas of the Northern Australian Outback. I wouldn't expect it to take 2 weeks to feel the effect. Perhaps something else is going on?

[RT18]

A bit out of the box and maybe I shouldn’t say it - but does your mum need to go to rheumy appt? If GP is managing taper well and ur mum is stable with no relapse of GCA why bother If they are only going to pressure you to speed up the taper?

Any increase in taper is only going to exacerbate her light headedness. We had real issues with light headedness below 10mg.

we ended up going back up to 10mg for mum(83) after a flare in May and adrenal crisis in July. She is never going to get off steroids so I am not putting her through any reductions to cause issues and have months to wake up adrenals. Endo has agreed for 10mg as maintenance dose. She doesn’t have an NHS rheumy- we have had one private consultation and he seemed happy with 10mg.

They both said to me the issue is if u r on 10mg for decades …neither of our mum’s will be.

we’ve also had skin tears…one healed well - the other now is not going as well.