A follow on from my previous post

[Sophiestree]

Can I just revisit this issue I have been having. I am now wondering if the high heart rate was a flare as my LVV originates from my Aorta. The reason I ask is because I continued to feel awful, had original symptoms of throat being so sore I couldn't touch my neck etc and so after about 10 days was prescribed antibiotics for throat infection. 7 days of that made not a jot of difference which is when the lightbulb moment happened re a flare and so I added 5 to my dose to make 11mg. It was at this point I realised that I no longer had the high heart rate, yes, the palpitation type feelings, but not particularly high. I took 11mg for two full weeks as I still had some symptoms, albeit mild. Yesterday I reduced and went to 7mg (I was on 6mg when this was happening), but instantly feel awful. Throat, back, head etc. and general fluey type symptoms.

Happy to plow through and see what happens, but just wanted to check if this was to be expected. Thanks all.

DorsetLady has suggested I go to 9mg this week and then 7mg next week, which I think I will do.

[DeepThought2]

Dear Sophiestree. I could imagine that high resting heart rates are related to LVV. I have been diagnosed LVV a couple of years ago and one of my symptoms was a high resting heart rate. My normal one is around 60 bpm and after getting ill (I had mainly generalised symptoms such as malaise, fever and night sweats) it raised up to 105 bpm without doing anything. When walking my heart rate was not much higher as normal. A PET-CT showed (slight) FDG enrichment on the Aorta and the Aa. subclaviae. After taking pred and Actemra my heart rates went down to normal quite quickly. In my case I am not sure if the high heart rate was directly related to the Aorta inflammation or a general inflammation response.

[Sophiestree in reply to DeepThought2]

It's strange isn't it. My heart rate is normally around 60-65 but now I can't predict anything.

[DorsetLady PMRGCAuk volunteer]

Actually this is what I said to your other post -but it might work in retrospect - don’t know until you try-

…::But you may have had a better result if you’d stepped down in 2 stages rather than one -say to 9mg for a week, then to 7mg. Not saying it would have made a difference, but it may have.

[Sophiestree in reply to DorsetLady]

Yes, apologies. I should have said that.

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

🌸

[PMRpro Ambassador]

Sore throat etc are typical symptoms of GCA/LVV.

And

pubmed.ncbi.nlm.nih.gov/352...

rcpjournals.org/content/cli...

[Sophiestree in reply to PMRpro]

Yes, I am kicking myself wasting all that time as by the time I increased it was set in.