GCA and Polycythemia Vera

[Heather270240]

Hi. I am writing on the off- chance that someone on this site may be able to help me. You will see from my profile that I have had GCA for 11 years with several flares the last October 2020? Increased Pred from 7 to 20. At present on 11.5. 4 years ago I developed PV a rare blood condition and put on Hydroxycarbamide 1000mg a day. All went well untill I had a flare in my GCA and Pred increased to 20. I then developed breathing problems and admitted to A&E where I was told it was caused by the toxins in the Hydroxycarbamide. This medication was stopped and I was put on Ruxotilib. All went well for the first week but 4 days ago I started to feel ill nausea exhaustion fever. I feel it is the high dose of Pred that is reacting to these medications but no one will agree. I am desperately trying to Lower the Pred but have to take it gently otherwise I will go into an adrenal crises. I know there are some very knowledgeable people on this site who may be able to help. At present I am pretty desperate because the new medication is very expensive and took a lot for Prof Harrison who I am under at Guy's to get. Apologies being so long.

[PMRpro Ambassador]

In terms of adrenal problems, you can probably safely reduce the dose fairly quickly down to about 8mg or even 5mg but it does run the risk of the GCA flaring or you developing steroid withdrawal discomfort. To some extent it does depend on how much the other part is stressing you - has anyone talked about switching you to hydrocortisone cover for the adrenal concerns?

But it is something to discuss and do only with the close supervision of your doctors.

[Heather270240 in reply to PMRpro]

My endocrinologist did suggest it sometime ago but he then decided not to. He said it would be too difficult to monitor. I do give it to myself when I go into a crisis. Many thanks for your reply.

[Heather270240 in reply to PMRpro]

How would you suggest I reduce to 7 mg my maintenance dose and one that doesn't appear to have an effect on my other drug please?

[jinasc]

Forgive me for asking what might be a stupid question.

Has your Professor considered Tocilzumab to help with the steroid reduction?

Or is it contraindicated with what you are already taking?

[Heather270240 in reply to jinasc]

My endocrinologist hasn't suggested it? Is it used instead of or along side Pred. Thank you for your reply.

[PMRpro Ambassador in reply to Heather270240]

I think your doctors need to get together - the endo probably isn't aware of tocilizumab, it would be the rheumy. But it should get GCA under control and allow a much lower dose of pred, for half of patients it gets them off pred altogether. You start it with pred until the symptoms are under control and then reduce it quite quickly as the TCZ keeps theinflammation under control. I don't think there are any trials with JUST tocilizumab because of the risk of visual loss which pred is known to prevent when used in a timely manner.

[Heather270240]

I don't have any symptoms of either GCA or PMR so am keen to get back to my 7 mg which I was on last October when everything was fine. Unfortunately you probably are aware that the different specialities don't talk to each other here in the UK unlike Spain and France not sure about Italy where you are. I have had major problems here getting info from one consultant to another. I am not keen to add another drug to the mix.

[Hidden]

What were your symptoms when you had your flare of GCA ? I'm currently taking 7.5mg till the end of June, when I will drop to 7mg for another month. After being prescribed 40mg for GCA back in March 2020, I've been using the 'Dead slow and Stop Method' recommended on this forum. So far and fingers crossed really tightly all seems good for me. I expect to get a few aches and pains while tapering but I just take a couple of paracetamols and all is good again. I'm petrified of GCA returning and sooner have the pain of PMR than the risk of going blind. I also hope my adrenals wake up and start producing as my dose gets smaller. I'll be seeing my rheumatologist on 5 July and was hoping to be on a much lower dose than I will be so I could have the test to see if the adrenals are working as they should. Not sure how low one has to be before this test can happen though....maybe 5 mg.

Anne

[Heather270240]

They like you to be 5 and below before a ACTH test is done. My symptoms were extremely tender scalp, blurred vision and raised CRP. I was put on 20 because I have already lost the sight of one eye. The problem I have in reducing is a confluction of drugs Prednisone and Jakafi for my PV.

[Hidden in reply to Heather270240]

I too only have the sight in one eye.....not due to GCA though. So must heed any potential symptoms.

[Heather270240]

Thank you everyone for your replies. All symptoms because I was having an adrenal crises. Luckily I have hydrocortisone injections so saved a trip to A&E. It was caused by an extremely stressful week. New medication for PV, dog bite, the antibiotic I was given I was allergic to, and a Tetenus booster which GP said I need not have had. So in all not a happy week. Thank you everyone once again.