Nose Bleeds

[abcsue1]

In January one Doctor thought I might have PMR after at least 6 weeks of symptoms, he sent me for blood tests it was his last day in town. After 2 weeks I was I pain but didn't have a doctor so went to outpatients, the Dr. did more blood tests, ex-rays and put me on three days of 50 mg of predisone. Instant relieve but as soon as I was finished my PMR was right back. Waited another 3 weeks and saw my new Dr. he agreed with the other two I had PMR and put me on 30 mg. predisone for a week then tapering the next, then three weeks of neproxen which did nothing but upset the stomach and the PMR came right back. Back to the Dr. he reluctantly gave me 10 mg. predisone for 5 weeks saying I would gain tons of weight. After two weeks my sister was hospitalized and after a 7 day bedside vigil she passed away. Now with two funerals and a houseful behind me, I have a chest and head cold and have been blowing my nose regularly. Both last night and night before I woke up at 4 am with a bleeding nose quite severe. My question is has anyone else had this happen, I have never had a nose bleed in my 64 years.

[Rose54]

Hi

I am so sorry you have had to deal with so much in such a short time.

I have had a few small nose bleeds which could have been due to high blood pressure although this could be a old wife's tale Im not really sure.

I do know that steroids can cause thinning of the skin as the pharmacy explained this to me when I get getting mouth ulcers. So thought nose bleeds could be the same thing .

Others will be along with more experience then me to advice you .

Take Care

Rose 

[SherryAnnie]

they put me in asprin and that gave me very heavy nose bleeds and once I refused to take anymore the bleeding stopped

[PMRpro Ambassador]

I'm so sorry you've had such a rough period - I do hope things get better for you.

You sound to be quite sensitive to anything that makes your blood "thinner" which both pred and aspirin tend to so it takes longer to stop bleeding. Pred also sometimes makes the tiny blood vessels fragile so the combination of the cold and that may have caused the lining of the nose to be delicate and the first nosebleed happened. Once there is a scar it will tend to keep bleeding.

But if you have PMR - and it sounds as if you do - then you need to find a doctor who knows how to deal with it because so far your doctors have done everything wrong. 50mg is far too high a dose even for 3 days and a short taper over a few weeks does nothing, This is a chronic illness, you will need pred for months, probably years, not a few weeks. You don't always put on tons of weight with 10mg pred - avoid carbs and you should avoid the worst, I lost 38 lbs by restricting carbs drastically and a lot of others on the forums have avoided weight gain in the first place. But without pred you will be immobile and not able to exercise - you will still put on weight, I had PMR for 5 years without pred and put on a lot of weight because of that. I didn't put on weight at first with prednisolone although it moved around to midriff and face/back of my neck. I did put on a lot of weight with Medrol - but I have been able to lose it all plus a bit more, especially from round my middle, by a very low carb diet.

This is a paper from top experts in the UK about how to manage PMR properly - maybe your doctor will take notice:

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

If not - find one who will. They aim for being off pred in 2 years - but it may take longer, especially if they try to force a reduction in pred dose. It will cause a flare if the disease process is still active.

[abcsue1]

Thanks everyone for their replies, I quit taking the Tylenol and didn't have a nose bleed last night. I live in a small town in northern British Columbia Canada and my doctor has referred me to a Rheumatolist in a larger center, but cannot get in till late fall. Since my diagnosis I have tried to follow a auto immune diet and have lost 15 lbs. with a low carb diet. My question is if you gain weight with pred. is it immediate or does it take months, not that it matters as I told the Dr. does it matter if I'm heavy or thin if I cannot get off the loo by myself?

cs

[PMRpro Ambassador in reply to abcsue1]

It depends - some people just put on weight in weeks, others take a lot longer. I think it probably depends on whether you are a fluid retention version or plain fat - and of course there is the combination where you immediately retain fluid and then gradually add the fat.

Where are you-ish? There are other Canadian ladies and there are some in BC and one in Northern Territories who also goes to Calgary and Victoria Island. and I'm heading for Vancouver in a few weeks...

And quite - I wonder sometimes if doctors have any concept what it feels like to be unable to get on or off the loo. Especially when your arms aren't long enough to toilet yourself...

[abcsue1]

I live in Quesnel, an 8 hr. drive north of Vancouver.

[HeronNS in reply to abcsue1]

You might be able to find people near you by using "people near me" in dropdown menu under your name at top of page.  But maybe not - nearest person to me is 544 miles away!