normal side effects??

[Jeromekjerome]

My mum has had small nose bleeds, yesterday morning and today and has a strange metallic smell to her urine - does this sound familiar to anyone?

She had got down to 20mg Pred and then a flair up happened - the only warning was a bit of tiredness then further - sudden, visual loss -she was completely blind (due to late GCA diagnosis last Oct) apart from a tiny perception of shapes at the top of one eye- the flair up put another veil over that. Doctors have said it's permanent- she is now back to 40mg for 4 weeks.

By the way - when you are blind - you don't know it's a nose bleed - she thought it was a runny nose!!!! - she was laughing about it- had it all over her face when she came downstairs.

current meds-

Med list:

Ramipril 10mg per day

Bedranol (propranolol slow release) 80mg per day

Calcium and Vit D chewable tablet 2 per day

Amitriptyline 5mg alternate nights

Aspirin 75mg per day

Felodipine 5mg per day

Hypromell eyedrops 3 drops per day

Omeprazole 40mg per day

Pravastatin 40mg per night

Prednisolone 40mg per day

Alendronate 70mg per week

[Yellowbluebell]

Bless herx. Thats a lengthy list of meds. Has anyone sat down and done a drugs review with you both? I am not saying they could be reduced but its worth just checking they are all needed.

Other people have occasionally mentioned nose bleeds but if i was in your position i would be tempted to see my gp about that and the odour. No doubt others will be along in a min who may be able to shed more light on the occurrence. All my love to you bothx YBB

[Yellowbluebell]

Having just checked your mums drugs, she is taking 4 different meds for her blood pressure!!. Were these all prescribed by the same doctor or different ones? YBB

[Jeromekjerome in reply to Yellowbluebell]

I have asked the rheumatologist and GP about her list - they are both fine with it :/ though I am not convinced

[Yellowbluebell in reply to Jeromekjerome]

Its just a bit heavy on the bp side which made me think it needed looking at. Maybe try the pharmacist and see what they say? YBB

[SheffieldJane]

Well this made me cry which is no help to man or beast. I am so sorry for both of you. 🌹🌹

Any one of these meds and combinations could cause these side effects. I would give my pharmacist a ring, they know what’s what.

Sending hugs and love. Xx

[Jeromekjerome in reply to SheffieldJane]

will do - thank you

[5lupins]

Wow that has put my low day into perspective.Glad you are there for your Mum.

Thinking of you both, take care. x.

[Hidden]

I am sorry the sight went, I was wondering after your last post. Of course blood is metallic smelling so have you smelled her urine? Just checking. I did find my urine was metallic smelling with amitryipline and some days my body smell and waste materials are very chemically or metallic smelling. There was also something in the amitriptyline coating that made my tongue numb if it hung around in my mouth too long.

I think i would just get a review of meds as others suggest and mention the bleeds to a friendly helpful gp. I got up to 17 items at one point... Down to less now but it was just a build up of different conditions and meds from different drs. There may be wiggle room in the meds that allow some reductions without impacting negatively.

I hope the flare is short lived. Please tell your mum that I send best wishes. I know all of us that followed your mum's story think of you all. 🌻

[Yellowbluebell in reply to Hidden]

Yes, we all follow this story because we are so bloody angry it happened. I think about it and wind my legal brain up regularly. YBB

[Jeromekjerome in reply to Yellowbluebell]

Every new consultant etc we have to see - I have to tell it to them all over again - every time - I have to try and stay calm as they all inevitably come up with some useless excuse and the same suddenly 'careful' expression while my blood boils and I sit still and clearly imagine destroying the room we're in.

Even when I show them the letter from the neurologist she saw months before, that clearly records her describing all the EXACT GCA Symptoms in great detail.

Once the endless scans and follow ups calm down I will look into legal proceedings.

[Yellowbluebell in reply to Jeromekjerome]

Definitely worth looking at and hopefully any financial payout will help you look after your mum and may just stop somone else going through the same as her. It doesnt just affect one person either as you and any other family are now having to look after your mum when she was quite independent before. YBB

[Jeromekjerome in reply to Hidden]

thank you

[Hidden]

Hi Jerome

As the others have said, ask a Pharmacist to look over your Mums Medication List, the BP Meds could have been changed & the old ones not removed from the List!?

Also, drop a Urine Sample off at the Doctors as the Nurse can Test it & then send it away if it’s showing any sign of infection. Get her to drink more water in the meantime as she may just not be drinking enough.

When your at the Surgery ask for Urine Sample Bottles so you have them in if you ever need them again.

Kind Regards

MrsN

[Jeromekjerome in reply to Hidden]

I will do! thanks

[Hidden in reply to Jeromekjerome]

The Pharmacist is a Good Ally especially for your Mum with her sight loss, so l always keep to the same one, it’s useful if you ever run short for any reason & if Mum has new Meds introduced they can easily be crossed checked.

Give Her Our Love from Everyone at HU 🌸

[PMRpro Ambassador]

All been said - just to say hi and best wishes to your mum xxx

[DorsetLady PMRGCAuk volunteer]

No need to add more, wishing your mum better days.

[jinasc]

It has been said better than I can. However I notice AA is on that list, has you Mam had a bone scan to see if she needs bone protection. If she has and she does, check out the Royal National Osteoporosis website and look for a one more friendly or the yearly one.

[Jeromekjerome]

I suggested a bone scan near the beginning of treatment but nothing happened. Its just on the list as a preventative measure I think - so I don't think she has any issues

[PMRpro Ambassador in reply to Jeromekjerome]

If she hasn't has a dexascan - no-one can know if she has bone density issues nor whether she needs AA or not. Lots of us don't despite pred ...

[piglette]

You may get a metallic smell if you are dehydrated as the smell is not diluted enough.

They say that if you take over five drugs the chances of contra indication is probably 99%.

[Jeromekjerome in reply to piglette]

Good point

[PMRpro Ambassador in reply to Jeromekjerome]

Not least because interactions are only ever based on one to one effects. As soon as you add a third medication, the status changes. And the more there are - you haven't a clue what is going on.

[Jane-s]

I think about your Mum often ever since I read your first post. What a brave woman she seems to be; laughing her about the nose bleed she thought was just a runny nose!

Also well done you. She’s so lucky to have you on her side

[Pippah45]

I too think of you both a lot. Remember to look after you as well as your Mum.

[diana1998]

Oh dear, poor lady. I had heavy nosebleeds when I started pred which then got lighter till I was on 12mg. Then they disappeared. Dr didn't have an answer for them but I thought it was the pred thinning the skin. They said an unusual side effect.

[Jackoh]

All been said but send very best wishes to you and your mum. X