Water on knee

Yes diagnosed in late 90's. Was not on medicine I just worked through it.

last Oct I broke my ankle was in a air boot four months and kept active. 

Once I got the boot off and got into my regular routine I started to notice pain in left arm,  then shoulder and now pain is horrendous ,

the stiffness is so bad in the mornings and the pain is in all areas you talk about on this forum. Arms, shoulders, hands, hips. and down back of legs. 

Husband is helping me in and out of bed and helping with some dressing of me.

I finally am going to Dr today,but I will tell you I don't know what he is going to do because I don't want to take prednisone. My daughter who has Chrones  disease was on it 20 some years, starting at 18 and she is now 40.

she has few of her own teeth, they fell out, she has a hump on her back from osteoporosis and etc. 

I used my left leg so much to make up for right in air boot and now have this fluid.

do you take a lot of vitamins, Eileen? I found this site and follow it all the time since April. Very informative.

also have you heard if anyone uses Quinine in place of pred?

thank you for all the help. I have been able to endure the pain but the last two weeks am taking  800 mg of Advil twice a day. Some days it works others it does not.

my mother in law also has PMR but not like I have it and she is 93 and

bowls twice a week, walks 6 miles a day and mows her own lawn, lives alone and is originally from England.

Thank you for listening.

Sorry Crohn's disease.

I had PMR for 5 years before going on to pred. I wouldn't go back - I couldn't have walked 6 miles a day however well I was able to manage it! I was never not in pain and frankly - it was hell. I've been on pred for 6 years and am now down to 5mg, have been down to 4mg but I feel better at 5mg. I feel well, I have few restrictions on what I can do and no side effects from the pred.

I will just give you a few facts - because pred isn't half as bad as it is painted. Your daughter's problems with Crohns are a bit different - the disease itself contributed to her problems, they weren't all pred, and it would also very unusual to be on pred for PMR for that long. She was also taking pred at the point her bones were still developing and building density. We already have our bones fully "built" so that is different. i don't have any osteoporosis problems at all, nor do quite a few people who have been on pred. My teeth are aslo all my own and I've had no problems.

The only medication that works reliably for relieving the inflammation in PMR is pred - I wonder if you mean plaquenil (hydroxychloroquine) when you say quinine? It is a derivative of quinine and used in arthritis but I haven't yet come across anyone for whom it has worked in PMR. Some rheumatologists think it allows for a lower dose of pred - there is little evidence though.

For 1 in 6 people PMR is just the prelude to developing GCA - if you do develop that, and there are some doctors who think it is more likely in patients with untreated PMR, then you have a stark choice: take high dose pred or risk going blind. The untreated inflammation of PMR also damages your body, making it more likely in the long run that you might develop certain cancers or various cardiovascular diseases including stroke and peripheral vascular disease which prevents good blood flow to the limbs - the pred does offer some protection there.

Advil (ibuprofen) is what is called an NSAID - non-steroidal antiinflammatory drug and although some doctors say it can be used in mild PMR I never found it helped at all. It also is associated with some very nasty side effects. It can cause gastric bleeding, much more so even than pred. One lady took 3 doses for PMR as ordered by her GP, and ended up in the ER with a severe gastric bleed. Just because it is available OTC it doesn't make it a sweety.

No I don't take a lot of vitamins - I get them from a healthy diet. There is no proof taking vitamin tablets helps anything - and overdosing on artificial versions of some of them can make you more likely to develop some illnesses including some cancers. I do take vit D supplements in winter. There are also no supplements that anyone has found to reliably help in PMR.

However - I have been accused of scaremongering when I tell people some of these facts. I'm not, I'm presenting the other side of the argument. Pred is not all bad, using pain-killers is not all good. I suppose it depends how bad you are - but when you are in constant pain and unable to get out of bed on your own or even toilet yourself then it puts a whole different complexion on taking pred. Pred has over 80 listed side effects. Most are found with higher doses and the lower doses used in PMR are associated with fewer. No-one has them all, some have very few. Some can be mitigated by lifestyle and medication. Weight gain can be helped by eating a low carbohydrate diet - which also helps avoid developing Type 2 diabetes and high cholesterol.

It is your choice of course - but don't throw the baby out with the bathwater. Pred isn't all bad.

 

Thank. You Eileen for your knowledge of PMA and medicines.

i went to the Rhumatologist today and he confirmed I have PMR and said 

he wanted me on 20mg for three years, Then he started to tell me the side effects I can encounter. .Also to not take vitamins because the make PMR worse. 

The he said " well, what will it be prednisone or be in pain and miserable the rest of your life". ( I am 74 , was very healthy and active till this hit) 

i have been in pain since March and fight every day to get through it, and today was the worse with my pain, and I just started to cry, and said I don't want steroids.

he replied. " well, go back to your primary doctor and let her take care of it 

which she won't want to.

So I composed myself till I got on the elevator and cried most of the way home.

i have always hated to take drugs and I am scared to death of prednisone 

Does 20 seem high to begin with? 

Oh, the water on knee!  It is not it is just part of the disease.

thank you again.i 

I assume you mean 20mg for 3 weeks not years? You start at 20mg to get the existing inflammation under control, then you reduce slowly in small steps until you find the lowest dose that gives the same result as the starting dose. You won't be on 20mg for life.

Follow this link

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and you will find a thread with links to all sorts of places with infofor patients about PMR. The NE of England support group site is particularly good. In the replies section is a description of a slow reduction scheme and explanation of the whys and wherefores.

As I say, it is your choice. You can remain in pain - and it is likely to get worse before it gets better. I have had PMR for 10 years - without pred it would be a rather painful world believe me. Until you try pred you do not know how it will affect you - you have at least to give it a try or, as I say, resign yourself to this for an unknown length of time.

Your rheumy has been very clear to you - and rightly so. He has offered what he can, if you reject it then you will have to manage it yourself. You cannot justifiably feel resentful because if you have PMR then pred at a low to moderate dose is  currently the only answer. 

I can't discuss it much more as I am about to go on holiday so go and read the links I've given you - and ask more specific questions on one or other of the forums, there are 2 others beside this one, and someone will help.

A special thank you. I will look at other forums, and he did say 3 YEARS

because I said 3 years he said Yes.

Enjoy your holiday.

Three years of pred is likely - but it shouldn't be 3 years at 20mg. If he intends doing that I would seek another opinion.

In those links I gave you is one under the "Bristol paper" - it is from a top UK expert in PMR and describes the reduction scheme they use which reduces the rate of flares from 3 in 5 to 1 in 5. Staying at 20mg for 3 years would avoid flares alright - but it isn't very good for you and that is what you are afraid of. They start with 6 weeks at 15mg, 6 weeks of 12.5mg and then 1 year at 10mg - a very different procedure to what your rheumy was offering. 

Do you get on well with your GP? Why not take a copy of that paper to her and ask if she will read it - and maybe manage you in line with that if she is able? At least discuss it with her - and see what she has to say. The recommendations for managing PMR are worked out by a group that involves both European and US rheumatologists so that shouldn't pose a problem either.

I will post on here later today after I see the doctor. It is 8 a.m. Here in states. My knee pains since I can't move it much.

Went to rhuemy yesterday and he said it was not water on knee but part of disease. My foot is also swollen.

I mention one night both legs were dead weight, hubby had to lift them into bed for me. 

Rhuemy said you have Restless Leg Syndrum.my friend has that and my legs were not as she gets. 

I am in Ohio and have tried to find a forum but haven't found one and it always comes back here. very knowledgeable PMR people on here glad I found this site