Now Able to Take My Advice!!!: Hello Everyone... - PMRGCAuk

PMRGCAuk

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Now Able to Take My Advice!!!

ValFF53
ValFF53

Hello Everyone.

Thank you again for all your knowledge and support.

I am really pleased to say that my friend saw another GP at her practice today who was very thorough. He has commenced her on Alendronic Acid. She then requested to be referred to Dr. Vinodh Devakumar Consultant Physician & Rheumatologist who is the Patron of the NW PMRGCA group and the GP is happy to do so!!!!

When she returned home from the doctors a letter awaited her - she is having the temporal artery biopsy on Thursday!!!

She sounds a lot better today and she said that the pain is improving. She mentioned that she has had the smell of natural gas since about two weeks before all of her other symptoms started. Has anyone else experienced anything like this?

I am just so pleased that things seem to be moving in the right direction for her.

Valerie

15 Replies
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Hidden
Hidden

I am glad she is feeling a bit better and able to deal with somr treatment issues.

Just pre-warn Her that a negative biopsy doesn't mean it's not GCA. Often can't find the cells but dx still GCA.

If she can take anymore info at the moment...she should ask for dexa bone scan asap to see if she needs alendronic acid. I had a scan and was ok so I take adcal rather than AA. If test shows she needs it that's fair enough. Well done for help I g her through the shock!!

lesley2015
lesley2015 in reply to Hidden

Hey poopadoop,

Did you geta Dexa Scan through your GP or consultant? I mentioned one to my GP and hes said it wasnt worth it because even if it was ok, AA stops the problem ....

I was on AA which upset me and then on Risonodrate, which I took intermittently for a while but have stopped now and no-one says anything .....

How can AA stop a non-existent problem?

If your dexa scan shows a problem then consider AA. If no problem, then why take another drug that causes its own problems?

Keep active, weight bearing exercise (walking) calcium supplements, VitD and vitK2, prunes, generally good diet which will include the magnesium and phosphorus you need. Address any balance or dizziness issues. These are the things that strengthen bones and reduce fracture risk.

My GP ignored my request for a dexa and passed me to the rheum (he probably hoped he’d not hear from me again! LOL). She wanted me on AA, I said PROVE I’m osteoporotic and I’ll consider it. My dexa results were excellent, and she accepted she did not need to keep banging on about AA.

Oh and I must add.... that’s a really scrappy reply your GP gave. Really lazy! I’d word it differently if this wasn’t a public forum!!!!

Hidden
Hidden in reply to lesley2015

I agree with soraya. I was on pred for 12months and as I was Vit d deficient at dx I was on vitd3. They tried to strongarm me into AA but it didn't suit me causing hip pain. After advice from forum I asked go for dexa scan and was fine. Just recommended adcal as I think most people on pred are recommended to take. Just be firm with gp and I said I wanted some sort of baseline to compare to future scans.

PMRpro
PMRproAmbassador in reply to lesley2015

AA doesn't "stop" the problem except to prevent lowering of bone density. And there is no direct relationship between low bone density and fractures occurring. AA may increase the risk of fractures if you are one of the people who longer term use causes to develop this fragile bone with cracks. And if your bone density is good - increasing it it not only unnecessary but adds other risks: for example, if you needed hip surgery and the bone was extra hard it could cause problems.

I think Soraya and I could have a good rant together - and it would HAVE to be in private or we'd be sued...

SusanEleven
SusanEleven in reply to PMRpro

I remember having a laugh reading an article that the link between low bone density and fractures is ... falling down. I thought well, that's an obvious connection that I had not thought about and yes, quite logical.

That was when I removed all the trip-trap little rugs in my home and my mother's (queen of scatter rugs). I don't go out on icy winter days when the forecast is ominous and got good winter boots with great traction. I even hemmed some trousers that were a bit long because they'd almost tripped me up before. I have an inner ear balance problem so my doc told me to wear shoes that tie and not to take many walks at night because I need my visual cues to stay steady.

My DEXA is not perfect but since correcting my Vitamin D deficiency many years ago and maintaining a good level --- plus lots of calcium from my food --- it has stayed stable and I've steadfastly refused the AA. My endocrinologist doesn't even bring it up any more.

PMRpro
PMRproAmbassador in reply to SusanEleven

Seems a fair summation of the available evidence!!!!

Yup - take away all those trip hazards, wear proper shoes, light dark corners, no pets on stairs or around ankles, work on balance if you can. Drink plenty of water to stay hydrated and keep the vit D up - I'm sure there are other things...

And NONE of them have side effects!!

Oh well done Val! It sounds like she’s in good hands now. That is an interesting peculiar symptom and the kind of thing a homeopath would be very interested in. Alas we’ve thrown the baby out with the bath water with these old indicators of disease and now feel almost foolish mentioning them. Now and then I have thought something was burning and nobody else can smell anything - who knows?

Not to rain on your parade but I am very wary of Alendronic Acid, it has horrible side effects and may not be the wonder drug that it was supposed to be. Has your friend had a DEXA scan for her bone density? AA should only really be prescribed if there are indications of Osteoporosis. I personally would much rather support my bone health with supplements like Adcal and good diet and exercise . You may wish to research it.

That is cheering news. She’s lucky to have you looking out for her Val.

Re the gas, I have on occasion (pre and post PMR) searched for a gas leak which turned out to be onions cooking. To me they smell very similar.

Ischaemia of olfactory nerve with GCA: interesting letter.....

jnnp.bmj.com/content/jnnp/5...

Rugger
Rugger in reply to Soraya_PMR

Soraya,

Thank you for this reference. Since diagnosis with PMR I smelt what I described as 'exhaust fumes' in the house, at any time of day and night, but then I could smell them in the supermarket when out shopping, so knew it was from within me!

It seems to have resolved now. I was on Lansoprazole at the time, which I have now discontinued, so blamed it on that.

Me: PMR 21 months, one flare at 12 months, now tapering to 6mg at 0.5mg / month DSNS

SusanEleven
SusanEleven in reply to Rugger

Sometimes I smell toast! It smells marvelous but no one in the house is toasting bread. I smelled it once on a drive as well.

Weird thing, I did have a few weeks where I smelled gas on and off most days. It was most annoying. I thought I had a leak in the car, but no. And I also smelled it in the house too. And in my office. Luckily it went away. That was around last December. I was tapering 9-8 and having sinus problems. I chalked it up to sinuses.

Hidden
Hidden in reply to Hindags

I smelt manure for a couple of weeks. I live in a city and no one else could smell it...and yes I asked my most honest (blunt) friend and she assured me it wasn't me😂

I have sinus issues. If you are taking a spray I think you can smell weird things after spraying.

I have had that smell of gas, to the point that I have wondered why the alarm hasn't gone off. My most frequent smell and taste, is cigarettes. I have never smoked.

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