Had Bettter Introduce Myself

[Nuff1]

I've been lurking for a few weeks.

Husband was diagnosd PMR/GCA in mid June this year.

However I do suspect that PMR had been evident for a couple of years but he put his aches, pains and restricted movement down to degenerative arthritis from a history of motorbike tumbles and a heavy job. Son-in-law (aGP) and I suggested he see Dr. since the problem could be something other than OA. (It was at least 25 years since he'd seen a Dr.)

He eventually did see GP as jaw movements had become really painful; his neck was more painful and top of his head felt really sore like sunburn.

GP said she suspected PMR and TA and sent off blood sample.

Next morning a phonecall, request to go to surgery results had come through. He was told to get himself to the Rapid Assessment Unit as fast as he could without breaking the speed limit.

3 days later he was discharged with biopsy booked for a few days later and follow-up in a month.

PMR/GCA40mg Pred pd and he felt much easier almost immediately

Unfortunately the Rheumatologist died following a climbing accident and no imminent appointment for followup.

GP monitoring Pred.

Beginning of August she said to reduce the Pred to 35mg for 2 weeks then 30mg for two weeks (we tapered slighly and took a bit longer)

Then mid September following blood results (he didn't ask what they were) she gave the following instructions:

25mg for 2 weeks

20mg for 2 weeks

15mg for 4 weeks then request bloods.

Again we're applying slight taper - have also requested 2.5 mg tablets on the repeat prescription in order to e able to apply 10% reduction. Gettting to 15mg is therefore going to take longer but I think we're going about it in the right way.

If you've read this far thankyou for your patience and any comments would be welcome.

[SheffieldJane]

Hello and welcome Nuff1. You have certainly have been paying attention in class. I expect that you are right and this autoimmune disease has been around for some time before diagnosis. It sounds like PMR morphing into GCA to me. I had also heard about the tragic accident with your husband’s Rheumatologist. She had another patient on here as well. It is important to apply a slow and gentle taper at this stage, but you know that. Are you familiar with the ones recommended on here like dsns?

Missing from your account is how your husband is now feeling, symptoms are the best guide when tapering down. Good work!

[Nuff1 in reply to SheffieldJane]

Thanks for your response.

The biopsy did indicate GCA - Pred is controlling symptoms

Hubby is not very forthcoming but he has said that old long term knee and back symptoms are now evident - not PMR related. He still has ease of movement neck, shoulders, hips (riding motorbike much easier re turning head) and changing position in bed is still easy.

He is somewhat irritable - but that has always been underlying with low tolerance levels and flash temper - just a bit more obvious nowadays.

I have to interrogate and observe closely to determine how he is (fortunately I'm a retired OT).

We're both 71.

[Hidden]

Hello & Welcome 🌺

I’m sorry to hear about your husband, the Consultant you mentioned was my Consultant also, she was a wonderful lady, greatly missed by her Patients & Staff.

Your GP seems to be looking after you well but definitely try to keep to no more than a 10% drop ie from 20-18mg

Your GP seems to be on the ball & understands tapering.

Was your husband in hospital in Wrexham, they have a brilliant Rheumatology Team you can ring & mention your husband was due a review appointment following admission. The Secretary is extremely helpful too & it’s worth a phone call as there is a Locum covering, I’ve actually seen her as l was running into difficulties.

I do hope he does well, keep in touch.

Mrs N 🌺

[Nuff1 in reply to Hidden]

He was in Wrexham - when we phoned re follow-up shortly after were told hubby would be transferred to the registrar - however a standard waiting list letter arrived - long wait.

Unfotunately OH is not given to making phonecall requests. Thanks for your info if he stars having problems I'll diall the number and stick the phone in his hand!

[GCA1947]

Dear Nuffi

I am not as well qualified to advise like Sheffieldjane and Mrs Nails, but I am a 71 year old man who only has G.C.A. since 12/2013. Did OH biopsy show any giant cells in his arteries confirming Temporal Arteritis=Giant Cell Arteritis? I had most of his symptoms but in addition a headache that lasted for 35-days and had me climbing the walls trying to get relief. Nothing off the shelf worked it was only Morphine Sulphate (Oramoph) that finally gave me a little relief. My Prednisolone started at 60 mg and took eight months to get down to 12 mg, then went up again and yo-yoed for several years

I am not a typical G.C.A. as I also have life-time Klinefelters Syndrome controlled by Testosterone Replacement Therapy and Osteoporosis is a side effect of K.S., unfortunately also a side effect of G.C.A. and high dose steroids.

My C.R.P. blood test results have been lower this year (2018) and Pred. dosage is coming down from the heights caused by my second flare. Last C.R.P. was 4 so looking better this year.

I hope OH continues to improve. This forum has been a lifeline for me and helped enormously when I was feeling down and frightened.

Best wishes to you and please look after yourself stress has a bad habit of kicking off unexpected ailments

Colin

[Nuff1 in reply to GCA1947]

Yes - biopsy showed the relevant cells

[PMRpro Ambassador]

Your GP may find this helpful:

rcpe.ac.uk/sites/default/fi...

It was written to help GPs with their GCA patients where recourse to a rheumatologist was not easy. I think reducing every 2 weeks is too often since the TAB confirmed GCA. There is evidence from a study that GCA can still be active after 6 months at high dose pred which is defined as over 20mg and he actually started at a relatively low dose for GCA. I would be in no hurry to go below 20mg for now.

Men and their health - such a problem sometimes! I have one a bit like that but he is slowly coming round to the concept he has to speak more firmly to our GP!

[Nuff1 in reply to PMRpro]

Thanks - will have to persuade him to see GP in a couple of weeks.

[PMRCanada]

Welcome to the forum! Others who have experience with PMR/GCA have provided some helpful info about these conditions and suggested tapering.

I have a soft spot for partners of those of us who have PMR/GCA, as we all know our relationships are impacted (especially pre diagnosis and the early months post). You obviously care about your husbands health and outcome, and he is fortunate to have your support and investment. The patience demonstrated by our partners is also a gift. We agreed early on to take time and space if and when needed.

Good luck moving forward to you and your family.