Another flare

[PatB1948]

I have had PMR and suspected GCA since 2017 and started on 40mg Pred. Tapering to 15mg in the first few months went well but trying to get down further has been a problem having had several flares along the way and having to increase dose. The lowest I have got to is 6.5mg. The last flare was in the summer and GP said to increase to 20mg which I did for two weeks and felt much better. I have been tapering since then and have got down to 8mg two weeks ago but now feel I am having a flare as my shoulders, hips and upper arms are sore and I can hardly move with the stiffness this morning. I want your thoughts on what dose I should increase to. I have taken 10mg Pred this morning but not sure if that will be enough and whatever dose I go to, should I stay on that until after Christmas. We are flying down south to my son and family for Christmas and I want to be feeling better by then. What advice can you good people give me.

[PMRpro Ambassador]

You aren't tapering relentlessly to zero - you are looking for the lowest effective dose. When you overshoot what that dose is currently you flare because the inflammation is no longer contained. If you do that repeatedly, it can get harder to get things under control so I suggest that this time you stop short of where flares have happened before. Many doctors send patients back to the beginning (or at least, the beginning for PMR) which is often OTT and may make things harder. What we suggest is adding 5mg to the dose where the flare happened for 7-10 days before returning to the dose ABOVE where the flare occurred.

So for you that will be a week or so at 13mg before going back to 9mg. And yes - no reducing over xmas, when on holiday, when travelling. There are rheumies who say not to reduce in the winter! I would definitely give it 2 or 3 months at least before trying another 1/2mg reduction.

[PatB1948 in reply to PMRpro]

Thank you for your quick reply PMRpro. I totally agree with what you are saying and will follow your advice. I am travelling on 23rd December so should I stick to the13mg throughout Christmas or go to 9mg on the 22nd.

[PMRpro Ambassador in reply to PatB1948]

Depends how long that is - you don't really want to be at the 13mg for more than 14 days at most or it may well make dropping back down more difficult. Maybe drop half way for a few days?

[PatB1948 in reply to PMRpro]

Okay, I will start 13mg tomorrow until 22nd then drop down to 10mg for a few days and then 9mg. Thank you.

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for dealing with a flare - just adjust the example to your current dose -

healthunlocked.com/pmrgcauk...

But when you return to lower dose - and 9mg as suggested by PMRpro.. no more reducing until well after Christmas.

You are also in the realms of adrenals needing to start working again...so little steps and slow tapers from then -

info re adrenals -

healthunlocked.com/pmrgcauk...

[PatB1948 in reply to DorsetLady]

thank you DL, I read your article but I didn’t think that I was at a low enough dose to affect my adrenal glands but it looks like I was.

[DorsetLady PMRGCAuk volunteer in reply to PatB1948]

Well although we often quite the figure of 7.5mg -it is only an average - it varies from person to person -for some it starts at 10mg or even just above.

[piglette]

I find increasing by 5mg for a week or so to hit the PMR on the head and then you can drop to a point a bit above where you were originally, works well for me. Reducing really slowly in small amounts when things are under control, I think makes a world of difference.

[PatB1948 in reply to piglette]

Thank you Piglette, tomorrow I’ll increase to 13mg for at least a week then drop back to 9mg for a while.

[piglette in reply to PatB1948]

Best of luck.

[SheffieldJane]

Have they discussed Tocilizumab with you? It might help you over the stubborn hump.

[PatB1948 in reply to SheffieldJane]

No, I was on Methotrexate weekly injections for over a year and although that helped me get down a bit, I couldn’t stand the side effects. Rheumie discharged me in September but tbh I found her hard going as all she went on about was getting off Pred asap. She gave chapter and verse about everything that was bad about steroids. I don’t think she was pleased when I said that quality of life is important too. I shall ask about Tocilumab next time I speak to GP but I try not to speak to them too often in case they start cutting down the prescription and keep going on about getting off Pred. Thank you for your input.

[PMRpro Ambassador in reply to PatB1948]

It requires a specialist and is quite restricted in the UK. I;d be surprised if it can be had with only "suspected" GCA.

[PatB1948 in reply to PMRpro]

Thank you for that information PMRpro.

[arvine]

Hello PatB1948, I am curious with regard to your original "suspected GCA "in 2017, I have been on pred since Oct 2016, my GP started me on that with diagnosis of PMR, without sending me for any bloodwork before prescribing a 40 mg dose at that time, within 2 weeks had referral to rheumy, which lead to some blood work in those weeks following appt with her. , but at this point, I am now down to 4 mgs, taking me a long time to taper, several stressful events of last number of years, and for last number of mos, new and disturbing symptons some may not be PMR related, as I have osteoarthritis, everywhere it seems, so not one day goes by without me experiencing pain, discomfort, and now, in last few days, head, skull tender feels bruise to the touch, wondering what or why your original diagnosis was "suspected GCA"" I have just done bloodwork, but for years, never seem to show up anything in bloodwork results, and I do have appt with rheumy tomorrow, as I called about the most recent scalp, skull , hurt to touch,

[PatB1948 in reply to arvine]

Hi Arvine, the suspected GCA diagnosis came about as I had some of the common GCA symptoms, sore jaws especially when eating, blurred vision, headaches and pain in right temple as well as PMR. I think that’s why they started me on such a high dose of Prednisalone, the dose for PMR only is 15-20mg daily. My GCA symptoms disappeared after a few days of being on 40mg and I started to taper and within a few weeks I get to 15mg which was enough to treat the inflammation of my PMR. This was all in 2016/17 and since then I have had several flares so dose has gone has gone down to 6.5mg and as high as 20mg. Like you, my blood tests are always normal. I am following the advice given on the forum to help current flare and have gone up from 8mg to 13mg for 10 days and then drop down to 9mg and stick there for at least 3 months. I hope this information is helpful to you.

[arvine in reply to PatB1948]

thanks PatB, well had bloodwork done 2 days ago, I am able to access results from lifelabs here, and see inflammation markers flagged |High" for the first time ever, so I am quite sure the symptons I have had for last week or so appear to be GCA, I have appt this afternoon with rheumy, may not be able to travel due to horrific storm coming in , but have called to see if He would call me , if unable to get there in person, so Im expecting him to increase my dosage from 4 mgs to a higher dose, when he sees bloodwork result, and advise what to do going forward, thank you for your reply and how are you feeling , and what dosage are you at now?

[PatB1948 in reply to arvine]

Hi Arvine, sometimes it is a relief when the blood at least shows something, then your fears are confirmed that it is probably GCA. Your rheumie will probably increase your dose by quite a bit if he suspects GCA but the threat to your eyesight is a big risk. I am on 13mg for last 3 days and shoulders and upper arms are still a bit sore so I was thinking of increasing to 15mg to see how I get on and if that helps, I’ll drop back down to 9mg on 22nd. Where are you? We are in Dundee, Scotland and also expecting more snow tomorrow, it’s very cold, -7C. Let me know how you get on with rheumie. Pat

[arvine]

Hi Pat, Im in Ontario Canada actually, sorry did you say you were diagnosed with GCA wiht symptons only? I see some people posting they have to do biopsy? Actually when my GP intially said PMR in Octa2016 he prescribed 40 mgs at that time, and only diagnosed from symptons, couldn,t lift my arms to brush teeth or hair without excrutiating pain, and shoulders, arms, hamstrings everything hurt, thing was he never did initial bloodwork before he prescribed that, then referred me to rheumy within couple weeks, and she had me start to taper to 25 mgs back then, and then started doing bloodwork, but the 40 mgs, with in hours, gave me some relief, was like a miracle, never any talk or symptons of GCA back then, now after all these years, tapered to 4 mgs, been there for 3 mos now, and now, I get these symptons? at one point about almost 2 yers ago, that rheumy suggested didn,t have PMR anymore, arthritis and old age?? I changed to a new rheumy at the first of the year Jan 2022, was not happy with previous one, taken long time to taper to this stage , last few years lot of stress, my son diagnosed with cancer 2018 multiple myeloma, had stem cell transplant, back then, this year, he was diagnosed with leukemia in May, and in Princess Margaret for over month in June, then in Sept, of this year, had a bone marrow transplant, so have been tapering very slowly as advised with extra stress in your life,,anyway, bad storm, ice, snow wind, so my rheumy is willing to do phone appt at 3 30 this aft, and see what he suggests, he will have bloodwork results, and I will explain symptons, then

[PatB1948 in reply to arvine]

I did not have a biopsy for the suspected GCA as I had already been on Pred for PMR for a couple of weeks. Apparently the biopsy does not show conclusive results when Pred has already been started. I was sorry to hear about your son’s cancers, you have certainly had a tough time over the last couple of years. stress is one of the worst things for PMR/GCA as I know only too well with my husband’s heart problems over the last few years. See what the rheumie has to say on the phone but I suspect he will increase your dose. Please let me know how it went. BTW snow forecasted has not materialised yet but will probably be here by morning. The time here is 11.50pm. Pat

[arvine in reply to PatB1948]

Hi Pat, well rheumy called, yes upped my pred to 25 mgs, sending my pharmacy script, and sent requisition to the diagnostic and imaging , for temporal arteritis ultrasound, so I will start on new dose again tomorrow, said will be in touch as soon as he gets results from ultrasound, stay on 25 mgs until then,

[PatB1948 in reply to arvine]

I’m sure you will get some relief when the new dose kicks in and maybe get some answers when you get your imaging scan etc. we woke up to heavy snow this morning, hopefully will not last too long. We have relatives in Toronto, been there to see them several times but not for a few years. Pat

[arvine in reply to PatB1948]

Hi Pat, hope so, seems tender spots move around on scalp, except top right part of forehead feels bruised, tender all the time, where do you live that you travel to Toronto , I am just east of TO in Ajax ontario

[PatB1948 in reply to arvine]

Hopefully you will feel a difference in your head and scalp tenderness when you are on he 25mg. I am in Dundee, Scotland and went to visit my cousins in Toronto but haven’t been for many years. I have nice memories of Canada. Pat

[PMRpro Ambassador in reply to PatB1948]

It doesn't show conclusive results even if you weren't on pred - unless it is positive. Positive is 100% certainty you have GCA. A negative result just means they didn't find the cells they were looking for - and there are several reasons for that, not least that the temporal artery is by no means always affected and even when it is, the lesions are unevenly spread.

Luckily my daughter is off today - hasn't got to get from Rosyth to Forth Valley hospital which is slap bang in the middle of the orange warning area.

[PatB1948 in reply to PMRpro]

thanks; PMRpro, I understand how results of biopsy work now. We have awoken to heavy snow in Dundee this morning, don’t think we’ll be able to get car out but we’re not planning on going anywhere anyway.

[PMRpro Ambassador in reply to PatB1948]

Too many hills in Dundee for snow!!! We had a couple of inches overnight - if I were going out I think it would be with the car since our roads are fine - and I have snow tyres which are compulsory here.

[PatB1948]

Yes we Dona e a lot of hills in Dundee and we live at the top of one overlooking Balgay Cemetery and Ninewells Hospital so snow seems worse up here than in other parts of the town.

[PMRpro Ambassador in reply to PatB1948]

I used to work at DRI and Maryfield - and lived in the Perth Road. In the old days when we got snow regularly!

[PatB1948]

Yes, we did seem to get more snow back in the day in Dundee. I was born in Maryfield and and frequently attended there and DRI with my late son who had brain damage and epilepsy which was severe. He died when he was aged 21 after aspirating in a fit and getting pneumonia. This was 30 years ago and I have always believed the the Triple Antigen vaccination caused the brain damage although couldn’t prove it. We still miss him but are lucky that we have another son who went to university and got BscHon in computer science. He has a lovely wife and two sons, one of whom is at university and the other at 6th form college. We are lucky and we are going down to them for Christmas. They live in Hampshire.

Thanks for all your good advice.