GP visit

[geater16393]

Have just seen my GP about pains in knee and legs, withdrawing off pred currently on 1.75 mg

GP asked if I was single and said If I got out more and socialised I would forget about my aches and pains!!!!!

[olive2709]

Have they checked your thyroid had this happen to me it seems pain in lower limbs is a sign of low thyroid levels

[caz3333]

Hi Geater, how dismissive of the gp to say that! Yes, going out & socialising can help take your mind off a lot of things but doesn't make the pain go away! I have recently started with pains in legs, hips & heels previously my PMR has been upper body. I had my bloods checked last wk to rule out thyroid & diabetes all came back negative. My gp said PMR is a very strange disease & manifests itself in several ways & moves around the body and I have had to increase my steroids back up to 10mg for a week from 5mg to see if it helps. Today is the first morning I can feel the difference so you may have to increase dose again for a short time to help control inflammation then reduce dose slowly again?

It is frustrating as I get down to 3.5mg then have another flare up and back to square 1 again! I was diagnosed 2 & half yrs ago. I would certainly return to gp for bloods testing to rule out other things. Good luck x

[PMRpro Ambassador in reply to caz3333]

If you are flaring repeatedly at 3.5mg that almost certainly means that 4mg is your longer term dose. You aren't reducing relentlessly to zero, you are looking for the lowest dose that manages the pain until the autoimmune part of PMR burns out. Only then will you be able to manage without any pred.

I'm very happy on 5mg and pretty good on 4mg which is my "lowest dose". I've tried getting down to 3.5mg 2 or 3 times now and within a couple of weeks the wrist pain and hip ache is back (see my reply to Geater). I decided the day before yesterday - back to 4mg. I have, by the way, had PMR for well over 10 years. It has never gone altogether as far as I know - I have had 2 major flares that were worse than when it started originally.

[DianeMills in reply to PMRpro]

Hi I got down to 3mg bloods were down and GP said try 2.5mg chemist give me a different make of preds than I usually have the pain is worse than ever. Do you think it may be a cheaper make of preds or the half mg I have dropped that's set of the pain again. I have had pmr for 41/2 years.

[PMRpro Ambassador in reply to DianeMills]

It could be either but you can't tell as you have changed two things at the same time. There is another thread somewhere where we have discussed changing brand of pred - doesn't have to be cheaper as such, just different. First I'd go back to 3mg - if that doesn't improve the pain you might need more of this version of pred. The best way to find out would be if you can get a couple of packs of the old version of pred and see if that helps at 3mg.

This is a very low dose - half a mg is now an almost 20% change in dose. Are you using the "Dead slow and nearly stop" approach or are you going straight from every day 3mg to every day 2.5mg?

[DianeMills in reply to PMRpro]

Thank you for replying I have yo yo'd for years 3mg is my lowest ever and coped quite well. The 1/2 drop usually ok with paracetamol. I can't find that thread about changing brand of preds has anyone else noticed.

[TigerEyes]

,Hi Greater

I just had to reply that gp needs to go through some of the pain that you have yes getting out is good to meet friends but doesn't take away the pain. It sounds like you may need to increase your steroids for awhile until the pain settles down and then reduce them. Are you under a rheumatologist that you could discuss this with or if not another gp in your practice, you may need to get your bloods checked.

I hope all goes well take care Ann x

[PMRpro Ambassador]

I think that is a GP I would sack and find someone more empathetic - do you have an alternative in the practice?

Someone may say something like that to me when they have walked a mile or two in my shoes - very unlikely that a GP will have had PMR but one who does now have it told us she now realised what she'd been trying to put her patients through by getting them to reduce too fast or too far. I wonder if it occurs to them that going out and socialising when every step is painful isn't the easiest thing in the world to do - not least because your friends rarely want to be hanging around waiting for you to catch up.

Remember - the pains in your knees and legs COULD be a flare. They could be osteoarthritis too but when you start to flare because of reducing too far it is sometimes different. My sign of a flare due to too low a pred dose is hip joint pain in the mornings and wrist pain. Every single time - they were the last things to go when I started on pred. So don't assume a flare will be the same as when the PMR started.

[Sallyaches]

I am very cross on your behalf about the single comment. You are likely to be more active for being single as there is no one else to do shopping, washing and all the other chores. Also if the doctor thought your low mood was contributing to a reduced pain tolerance you should have been screened for depression .

When you are not feeling your best and in pain it can be very difficult to get out and socialise as you can't walk or stand for long.

Next time I would ask for a different G.P.

Best wishes

[Judyta]

Get rid of him..... Every body is different and you may have decreased too quickly...

[Rose54]

Hi

I pity his poor wife if he's married

Rose

[Pipistrelle]

I agree this is a bit of a condescending attitude by your GP even if it was not meant to come across in that way. I agree with others that it is worth considering if you need to increase your dose a bit for a while -- you are down to a very low dose now. The other possibility is that the body does sometimes tend to have some difficulties as the doses get this low and the body works to restart its own cortisol production (the steroids turn it off). The other thing I found was that once I got to a low dose, the old aches and pains I had before I got PMR and which were eliminated by steroids, began to return. It can be hard to determine what is what sometimes.

[elainecleary]

Wouldn't be my GP for long!!!!

[tiasbear]

I'm down to 2mg Medrol which I think might be 3mg prednisone. I also have pain in knees, elbows, shoulders, hips, and into my knuckles. I don't understand why?? Is it from steroid withdrawal? Maybe arthritis in my whole body? Something else? Makes no sense to me. I'm also on Meloxicam.

[PMRpro Ambassador in reply to tiasbear]

If those are the pains that your PMR started with it sounds more as if you are now on too low a dose to manage the inflammation properly. You aren't reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms. A dose, by the way, that shouldn't require Meloxicam or any other NSAID since they shouldn't be taken alongside steroids. Even if Meloxicam claims to be "less gastroirritant" than others - less isn't not.

[tiasbear in reply to PMRpro]

The pain isn't as severe as it was when diagnosed in 2013. Also, I only remember pain in hips and shoulders in the beginning. My rheumatologist said he thought I may have arthritis so he gave me Meloxicam, although I didn't have tests of any sort, other than an mri about 15 yrs ago which said I have osteo in my hip. That's why I wondered if it is some kind of withdrawal pain. Rheumy also said he'd rather have me on Meloxicam than steroids long term.

[PMRpro Ambassador in reply to tiasbear]

Withdrawal pain tends to be there immediately you reduce your dose - as its name suggests. If you remain at the same dose it should improve over a few weeks or so. Pain due to the dose being too low tends to increase over time as the inflammation builds up. If the dose is still adequate and the pain is withdrawal then there should be no increase in the blood markers if you are someone who has that inflammatory response. Increased ESR/CRP indicate inflammation somewhere.

You rheumy might think meloxicam is a better option than under 5mg of steroid - that's his opinion. I'm glad he isn't my rheumy! Five mg or less is a very low dose - I suspect the side effects of long term meloxicam are as bad and potentially worse. If 5mg of pred alone works I'd rather 2mg more pred and no meloxicam.