Advice on Flare .

[cochise555]

Hi there all again

Having a flare still . I upped too 10 mg but finally decided to up to 15 mg . Been on 15 for 9 days . Still getting periods of knees on fire and hot round writs . Soar hips and shoulders .few fleeting pains in head and some jaw pain left side . My question is would it be better to stay on the 15mg for a while I’m bit reluctant to up any further and maybe I do too much and that is making it worse . I’m concerned I won’t be able to come down from 15 to 10 if I stay on the 15 too long . I was originally down at 6.1/2 for while but think I was getting worse and worse without realising it . I think I thought if I took 15 everything would be fine . Thank you.

[PMRpro Ambassador]

Are you sure this is PMR? Joint pain and heat is not a typical event in PMR. What do you mean when you say "getting periods of ..."?

[cochise555 in reply to PMRpro]

Sorry it’s my wording . It’s different pains that come and go all day . Might be the knees feel on fire for couple hours or round the wrists . Sometimes it’s the fingers that can hurt for half hour of longer . At the mon ent the outside of the shoulders at the top feel soar . Had this nearly all day. I don’t seem to know what pain is what or when or how long it lasts.

[PMRpro Ambassador in reply to cochise555]

That really isn't typical of PMR - in my opinion at least.

[cochise555 in reply to PMRpro]

Hi Pro do you think I have another illness running along

Side the .GCA/PMR . I had a blood test last week and hope to get a appointment this week to see if anything shows up on the results .

[PMRpro Ambassador in reply to cochise555]

It is possible you have something else with a polymyalgic presentation but it is difficult to say unless it is investigated with that in mind and not ignored.

[cochise555 in reply to PMRpro]

Thank you PMR pro when I get my doctors appointment I shall ask if I can have further tests and investigations .

[Smithson]

I am in a similar situation. Was managing on 7mg then had a flare at start of October so GP advised an increase to 10mg. This seemed to have little effect so with GP further advice, increased to 15mg. I was advised to stay at that for 2 weeks and then decrease in steps of 1mg on a two week basis. I have tried over the last week to manage on 14mg, then 13mg but today have gone back to 15mg as I don't feel the pain is under control. The downside is the higher dose of pred interferes with my sleep and I also have swelling around my knees which feel hot at times. I put this down to the side effects of pred. Really want to get down to 10mg and below and was expecting that the rise to 15mg would sort it out! Very frustrating to say the least.

[PMRpro Ambassador in reply to Smithson]

There is no reason why pred should lead to heat and swelling of joints. High doses may sometimes cause joint and muscle pain - but that isn;t the same.

[Smithson in reply to PMRpro]

My legs feel heavy generally, like tree trunks, and as if there is a build up of fluid which seems to settle above the knee. I don't think I described it very well, the pain isn't in my joints as such. I am fairly inactive at the moment so wondered if that is the reason , added to the pred causing fluid retention?

[PMRpro Ambassador in reply to Smithson]

That's OK then (if you see what I mean). My concern is always that the diagnosis of PMR is hiding the fact it is possibly an inflammatory arthritis with polymyalgic onset and we have had a few members with that.

[Smithson in reply to PMRpro]

Thanks PMRpro, I do see what you mean, your comments much appreciated.

[shazstep]

I experience burning sensations mostly in the feet when I am tired (which does not take much). My belief it is all part of this horrible disease for me. I tend to sweat lots also, like after vacuuming one room or doing grocery shopping. Side effects seem to be far and wide for everybody.

[cochise555]

Yes I’m always sweating too . People keep telling me it’s winter when I have the door open all day . Lol I am certainly lost on all the different side effects of the illness and the tablets .yes you are right side effects different for everybody.

[Smokygirl in reply to cochise555]

Me too! Last night out for dinner at friends suddenly started to drip with sweat—- so embarrassing! Never had it at 50 —- don’t like it at 77 🤪

My OH said it wasn’t noticeable but I had to mop my face with my napkin!

[Hidden in reply to Smokygirl]

My friends and family only notice when I don't sweat. I am in single figures now but sweated through diabetes, menopause and straight into pmr then pred. The thing that does it now is stress.... And I mean good stress and bad stress, and it could be the blood sugar spike from food combined with the "stress" of being on best behaviour. I fan myself once the ambient temp gets above 15 degrees. Dr's waiting rooms, hospitals mean wet hair. My younger sister finally understands as she is going through menopause so she turns the heating down for her now. Result!!

[Smokygirl in reply to Hidden]

Thank heavens we can laugh at ourselves! 😘😘 🤣🤣

[cochise555 in reply to Hidden]

I was hoping they would disappear when I got into single figures. Lol .

I also have a fan that I take out sometimes and people look at me gone out . My daughter-in-law is a cold person and likes the heat whacked up when she comes so I make any excuse to get outside cool off. Lol

[Hidden in reply to cochise555]

They used to go mad with me opening windows and doors. 🥵

[cochise555 in reply to Smokygirl]

I know can be so embarrassing especially when you out . Nice OH mine would have said opposite . 😂

[Smokygirl in reply to cochise555]

🤣🤣 So would our son!! 🤪🤪