I haven’t posted in a while but thought I’d share my news following my latest rheumatologist appt and ask for your thoughts. I’ve been chugging along reducing my pred and have been on 5mg for about 6weeks. I feel ok - but stiff in the morning and tired later in the day but nothing that’s really stopping me getting on with things. I had an telephone appt today with a new consultant who has reviewed my latest PET scan ( from over 2 months ago) which shows large vessel vasculitis in various areas of my body and my CRP is 34. I’ve been told to up my pred to 40mg for 2 weeks and then to have another blood test. 40mg sounds scary to me - I’ve never been over 20mg. Consultant wants to get the inflammation under control and then for me to start methotrexate or another similar drug. I thought I was doing ok - obviously not! Thanks in advance for any wise words.
From 5mg of pred to 40mg 🙄: I haven’t posted in a... - PMRGCAuk
From 5mg of pred to 40mg 🙄
With LVV you need 40mg initially, but there also maybe a bit of -
“oh my gosh(!) it’s 2 month since PET scan - better cover my back” approach.
40mg might sound scary, but plenty have been on it - and higher - and lived to tell the tale 😊 (self included) … and 2 weeks is not that long in the great scheme of thing especially if it’s saving you from serious issues with LVV.
As we often say, better safe than sorry…
as for adding In other drugs, others with experience will be along shortly. ..particularly SheffieldJane and Rugger
LVV is a sneaky enemy - and I really do wonder how many of us have had it in hiding because no-one looks for it. I am glad to hear that consultants are taking it seriously and you DO have the evidence.
It is likely to be a bit different on 40mg though!
I was wondering if the extra prednisone takes it away Kinda scary most don't know they have it!
It is said that a quite high percentge of patients with "just" PMR symptoms actually have GCA - which is probably extracranial GCA or LVV. At the Norfolk&Norwich hospital ALL patients with a PMR diagnosis are screened for GCA - not sure how they do it, I doubt it is PET-CTbefore pred which is probably the only reliable way to get the right result.
PMR is regarded far too lightly,
I live in Norwich and have had PMR fir two years and am on 10 mg pred atm . I’ve never been referred to the NNHU nor do I have regular blood tests !et alone see a specialist!! Think I’m being neglected somehow !
Goodness, 2 months! LVV can have no symptoms, though you had a few grumbles. Even then, there’s not many who would say, “hmm, mild morning stiffness, it might be LVV”. 40mg is a usual starting dose and there are lots of us that are here to tell the tale from higher. You’ll have us to help you on your particular journey with it. It’s good that it was found!….eventually.
that’s the thing - I feel pretty good. I see the consultant- in person - in 3 weeks. They haven’t managed to access my previous PET from early ‘22 to compare, only the notes. LVV just has a scary ring to it and I’d sort of thought I was ‘getting there’ with the PMR. I felt wired on 20mg of pred so can’t wait to see what 40 feels like!!! In the meantime I’m on hols in central Italy upping my vit d and carbs! Thanks for your responses, it really is much appreciated.
Enjoy - hope it won't be too warm for you next week, We're to get lower 30s up here Monday/Tuesday but Florence could get 39C and that is too warm!!!!
No point in getting in a tizzy about about it, difficult though it may be - hopefully 40mg will sort it out pronto. But if that’s what you need, that’s what you need…
Enjoy rest of hols… 🌸
I initially felt fantastic on 40mg but it's not something you want to be left on for months
I’ve been in 45 mg daily ! Now tapering off . On 30mg so far . Having a bit of pain , but nothing major.
Sorry to hear of your results ! I do find a high dosage of steroids a pain ! Simply because I felt like a zombie 12 hours out of 24 ! And so fatigued . I wish you well & take care .
All the best
Sorry you are having to take the scenic route with this thing. I did okay reducing my prednisone until I started with GCA at Easter and went up to 60mg. Have been tapering down but I know the PMR symptoms have been creeping back but I thought they would settle. Bloods this week showing high CRP and ESP and back up the prednisone has gone. I think we just have to be thankful that we have the drugs to keep us relatively safe and try to go with the flow but it isn’t easy. Does sound like you have a sensible Dr as do I and for that I am very grateful. All the best for your journey.
I started with 50mg I fear any less we might not have obtained the same results it’s been 11-months I am at 8mg. and 20mg methotrexate injection once a week I didn’t realize how far I had slid until I started taking it and feeling better, worse part immediately was the increased desire for food! Then moon face etc. etc.
Hi Rebsy, good luck with this unexpected increase … having had to reduce twice from 60mgs ( now at 3mgs), I’m not sure you’ll notice a huge difference between 40 and 20… for me it was always the same experience of not feeling oneself, but a slightly mechanised version. As long as it achieves the purpose of keeping you safe, it’s a necessary sidestep. All best…
hopefully this will get symptoms under control.
I’m a bit confused though as I’m not under a consultant and no real monitoring from GP. Had a blood test a few months ago as I was bruising a lot and they said inflammation was still up but not actual details shared with me. I’ve been reducing and got to 3mg but have recently had a lot of stiffness/pain in hips, elbows and feet sore again nearly as much as when I was first diagnosed . Tried a slight increase to 5mg for a few days, helped a little. Nobody has ever mentioned a scan, should I have been referred for one? Hearing your story has made me worry. Any suggestions if I should do something or not worry would be helpful.
You need enough pred to manage the symptoms - always. If you take too little, the left over inflammation will just build up slowly until you feel as bad as you did at the start. Symptoms are a much more reliable way to monitor how you are doing as the inflammation markers only respond if there is enough inflammation present for long enough and they tend to lag behind, If inflammation was still up last year it was a sign that either you needed a bit more pred or longer where you were.
If you flare because you get to too low a dose then you need to add 5mg to the dose WHERE YOU STARTED TO HAVE SYMPTOMS, And it needs to be that much to feel better - once you feel better you drop back to the last good dose. Pussy-footing about with a mg or two never achieves a lot.
thanks, I think I’ve just carried on reducing partly as I was pre diabetic in last 2 blood tests so trying to minimise that instead of considering inflammation. I know I was pain free at 4mg and doing well so should go back to 9mg and then work back down to 4mg if pain control takes longer than a week?
You can stick at the higher dose for up to 2 weeks and still drop back quickly. Of it were me, I'd drop to 5mg rather than 4mg to be sure and then taper more slowly again.
thanks I’ll try this. Just waiting for a new supply if pills as won’t have enough to start today.
this link includes advice for dealing with a flare -
I found cutting out carbs (anything white is banned , or the the brown versions, and of course no sugar...) moved me from diabetic to normal . i was on 40 mg at the time. I have kept to this diet throughout.
Do ask for a referral if you’re concerned. I think I waited about 2 months to see someone on the NHS but that obviously varies around the country. I have had 2 PET scans ( one on private health insurance where they did every test you could name!) the most recent one on NHS - my inflammatory markers were consistently high- to rule out any other underlying problems.
I have been on long taper, Biopsy proven GCA since May 2023, down to 1mg . . Had aches etc, and noticed possible jaw Claudification, difficulty chewing on right side, so did blood tests for ESR and CRP . . call from Rheumatology following day, both raised 59 and 54 ! So immediately back on 40mg, prescription for 2 weeks, collected from Rheumatology dept, and dispensed at hospital (QA Portsmouth UK) Due to see Consultant in 10 days for review. Hope this is just a blip, but aches and pains have gone! Really hope I can have a fast taper . . this GCA journey really is a marathon not a sprint! Good luck. xx
Um - do you really mean May 2023? Because if so, to be allowed to get to single figures pred in barely 2 months is hardly a long taper.
Do please complete your profile - it helps us such a lot.
Sorry ! Should read May 2020 !!! Started on 60mg after 4 day in hospital on 500mg IV to save sight in right eye, too late for left eye.
Sounds more like it!
Gosh, yes, that is better!
When did the aches and pains start? It is possible you didn't need to go all the way back to 40 but as DL says, it isn't worth the risk not doing it. Three years really isn't that long in the great scheme of things - did the rheumy suggest a time scale other than the 2 weeks?
Really hope I can have a fast taper . .
That really depends on your GCA - and as you have already lost one eye, you CANNOT risk the other [been there, done it, got the T-shirt] - as as PMRpro says do you really mean May 2023 for proven biopsy?
Also if it saves your sight . .mist important! I lost my left eye, so extremely important to keep the right eye.
I was also diagnosed with LVV by PET-CT scan, 3 years after the initial diagnosis of PMR. My PMR had been difficult to control and my CRP & ESR were always up and down. My rheumatologist imagined that I had always had GCA and my 'relapses' were difficult to manage, so I was eligible for Tocilizumab. I felt very well on it, so it was the right drug for my type of inflammation (IL6, presumably). However, TCZ is 'rationed' to 52 weeks of treatment in the UK, so my allocation had to end. I would go back on it tomorrow, if I could! You say "...or a similar drug." Do ask about TCZ!
TCZ enabled me to get to zero pred a year ago, so I would have been on no meds at all. My Rheumatologist didn't want to take that risk, so started me on Methotrexate. After 6 months, the PMR-like symptoms returned, so we stopped the MTX as it didn't seem to be helping. I went back on 5mg pred for 5 months and am now tapering at 0.5mg / month - just starting the drop from 4 to 3.5mg.
All the best to you - it seems you are in good hands!
PMR: 2016
GCA-LVV: 2019
Diagnosed in Jan. 23 with "possible" GCA, ER upped me to 60mg. Pred. Had a temporal artery biospy a few days later and also Ophthalmologist exam. No GCA. It was the tapering down as I was at 14.5 mg. Which was difficult and I am now down to 22.5 and if course Rheumatologist is at me to "get that Prednidone down". She is a Pred racehorse. She wanted 5 mg. every other week. I chose go a slower route.I was diagnosed with PMR in Jan. 2022 and was given 20 mg. back then. So back to where I started, but armed with a lot more knowledge rec'd from this wonderful forum. I'm very sorry to hear of the LVV diagnosis. You got this! Take care.
Loved... "She is a Pred racehorse"...it fits so many of these rheummies, including mine......LOL
" No GCA"
Do you mean that they didn't get a positive biopsy result? That doesn't mean you don't have GCA, it means they didn't find what they were looking for - not the same thing at all. Various reasons, starting with it not being present in that bit of artery, it doesn't affect everywhere equally. And what you describe could well mean it is somewhere else ...
Oh I know. Just wondering if all these muscle spasms in back and ribs, also hips are related to gca or or LVV. For the life of me Pro I cannot get this rheumy beyond the PMR dianosis. I have been bed ridden here for two weeks. Exception to fight my way up for some walking and sitting on my walker. Max about 10 mins. Can now sit on loo but cannot reach around. ER useless.
They found "nothing " with the TA biopsy. It's the "Golden Standard" and it doesn't matter. I had blurring and double vision the other day. Right eye worse. Pharm said to stop the pregabalin. Just when it seemed to be kicking in as far as pain goes. Double vision stopped. I know in my gut there is something else. I'm now at 22.5 Pred with the tapering, not sure if I should be so doing with all this pain. ER docs know very little to zilch. Had a new ct scan done Thurs past. Not a contrast one. Hopefully between Rheumy and Ortho surgeon (who is doing ct comparisons) they may get some answers. My thought was perhaps Myofacial Pain Syndrome? I've been researching. Lol
The "gold standard" doesn't mean it is infallible, it means it is the best they have to measure other approaches against. In the meantime the ultrasound technique has been validated as equally good/reliable and in fact catches many cases that biospy doesn't, especially in LVV by looking at the subclavian and brachial arteries. Any rheumy who believes that the TA biopsy is 100 percent correct needs a reality check. If it is positive it is 100% certainty it is GCA. If it is negative - means nothing,
Hi Rebsy
Sorry for late reply - been on holiday. My tale is similar to your - started with blinding headaches in Nov18 -diagnosed with GCA with no proof -sailed along with the pred until march21 - was very ill -ESR off the radar into hospital - Pet scan showed LVV - upped to 40mg and tapering schedule which I slowed down a little and iron infusion which sorted the low haemoglobin - and put on tocilizumab (which I am fortunate to be still on!) got down to 5mg by June 22 - adrenals checked and ok but been mucking around with 3mg still with aching hips/buttocks for a short period - rheumy is the get you off sort but I am going to fight to get another scan since there are no symptoms for LVV how do they know it has gone??
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