pmr- fibromyalgia

[Vito5566]

Was told I had pmr then a year later was told it was fibyo . Specialist wanted me off steroids as quick as I could as it mask so much . So I achieved in six months going from 15mil to 5mil . Never have I endured so much pain . I need a rest before I go to zero . My question is I had severe swelling in feet & upper leg that's painful & making walking hard. I tried everything including diuretics . Nothing working do I have to except I need to wait to go to zero . I tried feet elevated & compression socks . I been checked out my heart & BP is good

[SnazzyD]

I’d be looking for a second opinion. I don’t think it is acceptable to leave a patient with so much pain and disability for so long. Likely your sleep isn’t very good either. These things alone come with health risks in themselves, so the doctor appears to be just swapping one set of problems for another for an academic exercise that is going on too long. If it is Fibro, the steroids won’t change anything whether up or down, so flushing out Fibro by reducing the Pred doesn’t make sense. If it is to check for something else, you are very symptomatic so what are they waiting for? To be fair to the doctor, have you reported back in the meantime that you are in such a mess? Even to the GP?

Regards to swelling, it isn’t enough just to say it isn’t your heart and diuretics don’t work so, oh well lucky your ticker is ok never mind anything else, bye. A b/p and a listen to the heart doesn’t tell them for sure there are no cardiac issues either. You are not getting better, you are getting worse. 5mg is not masking it so that the masking reason is a bit flakey now. If you have a hotline to the department it’s worth using or I’d be making some noise with the GP at least and they should be contacting the specialist to say your physical state has cause for concern.

[Blossom20 in reply to SnazzyD]

I don't understand why rheumies are so keen to get patients off steroids. Of course I know it's because they are bad for us, and they mask other conditions....but the reason they give them in the first place is to bring down the inflammation and stop the pain.....so if the inflammation and pain are still there, then why stop the steroids thus causing the patients agony, immobility, Insomnia etc???

[Vito5566 in reply to Blossom20]

Well I was misdiagnosed & have no reason to be on them & also I have reacted badly with them hence why I want to get off them

[SnazzyD in reply to Vito5566]

So your question was, do you need to be down to zero before all this swelling etc is gone? It is impossible to say to be honest. Normally at 5mg the usual fluid swelling type side effects are much less by now. If the swelling is from having gained weight, being on a low dose may still be sufficient to keep that weight up and the usual advice of cutting carbs severely still applies; it certainly did for me.

We can only advise on PMR and if this isn’t PMR then we are as at sea as you are. If the swelling is due to other autoimmune conditions or something else, it’s over to your doctors really. If Pred was controlling the pain at one point, then the diagnosis of PMR perhaps shouldn’t be discounted just because other issues have been unearthed as well.

What I am saying is that you are pretty symptomatic with something now so it doesn’t seem humane to keep you suffering waiting to get to zero, unable to work. The 5mg is clearly not enough to mask whatever it is. It may be that Pred wasn’t the causes of some of your troubles at all. Another consideration is that if your adrenal function doesn’t recover as quickly as you are reducing, you will be forced to slow down anyway. Time for them to start doing something, perhaps even refer you to another type of specialist.

[Vito5566 in reply to SnazzyD]

Snazzy I can assure you it's not heart failer it may be my blood pressure pills Also I have lost weight but still need to lose two more stone But like what you said I come down very quickly I 10 mil in 6 months & I knew it would be painful I'm just fed up as the swelling been with me 4 months & has not gone down I expected at 5 to have a lot less . And I'm giving myself 3 more months before I start reducing again as I need a stable period Thank for realizing where I was coming from Sorry for any confusion

Steve

[Vito5566 in reply to SnazzyD]

Thank you your answer helps. We got there in the end sorry for confusion .

[SnazzyD in reply to Vito5566]

I think we all really hope you get some resolution to all this as it has gone on long enough. It is so difficult to fight one’s corner at the moment and when feeling rough.

[Vito5566 in reply to SnazzyD]

Thank you and have a lovely Sunday

[PMRpro Ambassador in reply to Blossom20]

Because many have been brain-washed that PMR only lasts 2 years and believe it lasts longer it isn't PMR so there must be another answer. Of course - as Prof Sarah Mackie says and we all know, that is a myth!

[Vito5566 in reply to SnazzyD]

This was a second opinion

[PMRpro Ambassador]

Find another doctor - if your symptoms were being managed well on pred and have returned without it, it sure as eggs is eggs is unlikely to be fibro. It isn't an inflammatory condition and doesn't respond to pred,

I don't get this assertion that "pred masks things" - it relieves inflammation, that isn't "masking", that is a clinical effect, it is why it is used. But if it were fibro, it would manifest despite pred as any of the several people on the forum who have both would tell you.

If you have been on pred the entire time of your PMR diagnosis the last 5mg are going to have to be MUCH slower - adrenal function has been suppressed at higher doses and must be given time to recover, it doesn't happen overnight.

[Heron82]

I too was told I may have Fibro and not PMR. After a spell of pregabalin which did nothing to control the pain after discussing with the consultant I weaned off taking it as per the recommendations. I was on steroids throughout and they contrite Odin and inflammation. When I experience an episode my thighs swell up. Stuck at 10 with pain I can tolerate, don’t want to up the dose or yo-yo so will stay here for another couple of weeks before trying to get to 9.5 mg again. Good luck.

[Vito5566]

Hi

I'm on 5mil steroid and the pregablin & paracetmal quite effective. My wife has fibyo so I'm pretty sure it's the same. My problem is the swelling are painful & hinder me esp my left leg which is pretty useless . I'm back at the doctors again next week so we see It might be my blood pressure pills which can cause swelling It's ticking off boxes but thanks for your reply & good luck

[Pixix]

I have both fibromyalgia and polymyalgia. The checks in diagnosis, through examination by doctor, then rheumy are different from each other! Suggest you find another doctor, maybe, a second opinion? Good luck!

[Vito5566]

Your right & I did as the Doctors messed me up so I saw a top specialist who is rheumatologist who was amazing worked out it was fibyo . Hence my questions which was about swelling on ankles & feet due to steroids after tapping from 15 mil to 5 mil. . But people think I haven't had other option is

Thanks for your reply

[Pixix in reply to Vito5566]

Fibro is so easy to diagnose, the doctor only has to know the places to ‘press’, gauge the reaction, & give a score, & that’s it! I was offered Gabapentin & Pregabalin to help my fibro, but the side effects were colossal, & worse than pred! The only swelling of limbs etc I suffer is due to bad arthritis.

[Vito5566 in reply to Pixix]

Funny these drugs don't affect me but steroids do

[PMRpro Ambassador in reply to Pixix]

That assertion always confuses me - I had 11 fibro spot hits which theoretically is fibro-positive but all the generalised pain went on 15mg pred and some of those trigger points are myofascial pain syndrome points as they are attachments which I also have.

[Pixix in reply to PMRpro]

Personally, I think the diagnosis through pressure points is great if you absolutely definitely have it! The scoring has changed since I was first diagnosed,oh about 15 years ago now! The rheumy said I had ‘a full house’ in her letter to my doctor, then went on to say that’s 18 out of 18. I didn’t even know what she was doing when she started ‘poking’, as it had already been diagnosed by 2 rheumies at that point. I think you can easily be on the cusp…I guess now that is with about 11 points, & then it goes on other symptoms and some points, as you say, actually point to something else, like myofascial points. It’s nowhere as near as good as, for example, a blood test, but for me, when it’s as conclusive as mine was, there’s little or no doubt! But as I can’t manage the drugs they offer, plus the latest rheumy yet again re-diagnosing it, all both of them did was to give me the latest brochure. But, like PMR, no test can purely say it IS! Symptoms are the key. As you know, some medics I’ve seen lately think I don’t have PMR, despite a fantastic reaction in first week of pred. S x

[Vito5566 in reply to Pixix]

Absolutely 100% agree with your. Thank you for taking the time out to talk to me . I wish you good health for the future. All the best

Steve

[Pixix in reply to Vito5566]

Take care! S x