Sensible GP, Rheumatologist not so much…

[Spittal9]

Telephone consultation with Rheumatologist yesterday. He’s not happy that I’m on 14mg of prednisone and wants me off the steroids. Been off work now for 6 weeks with a flare up, which he says he doesn’t think it is, which is why I increased my dose in agreement with GP. Although he has no answer to what it can be. He’s going to write to my GP and get him to prescribe methotrexate. Been reading up about it and really not sure about it.

So, June 2021, I’m now back to taking 11mg of prednisolone, still have terrible fatigue but feeling less pain. Doing slow taper to 10mg.

July/August 2021 and I am exhausted, pain in hips and morning stiffness much worse. Was tapering down to 10mg but stopped that. Saw GP and he agreed for me to go up to 15mg to get inflammation under control. Did this for a week and have stayed at 14mg for now. Got lots of blood tests done, all normal, including inflammation markers. GP said they don’t just go on the results of the markers, I’m pleased to say. Been off work now for 6 weeks. Still really tired but pain has gone and stiffness is much better.

[PMRpro Ambassador]

It's time they let you settle down and just taper very slowly and carefully so you don't get into a yoyo pattern as you have done. You were started on too low a dose for a start but since then there has been little sense in the dosing. And you were back at work - that always seems to require extra pred to cope. Once a flare starts it doesn't just disappear in a puff of smoke, it takes time.

[Spittal9 in reply to PMRpro]

I’ll discuss it with my GP and see what he thinks. I just think adding another medication in the mix is not going to solve my problem. I’m happy now that I seem to be heading in the right direction again to taper slowly and carefully.

[DorsetLady PMRGCAuk volunteer]

As you say, sensible GP, so stick with him, and his advice.

Rheumy is obviously extremely clever if he can see how you are over the phone.. not! what is it with some of these people.

[PMRpro Ambassador in reply to DorsetLady]

What's the difference between God and a rheumatologist?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

God doesn't think he's a rheumatologist...

[PMRpro Ambassador in reply to DorsetLady]

Boom boom!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Been on here too long!!!..or not as the case may be. 🤦‍♀️

[jinasc in reply to DorsetLady]

DL and PMRpro............I do wonder🤔🤔 about you two sometimes.........

[123-go in reply to jinasc]

Our very own double act 😀. Where would be without them?

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

…really? Can’t imagine why 😳….

[PMRpro Ambassador in reply to DorsetLady]

I'd have thought she knew us by now ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Mmm…

[jinasc in reply to DorsetLady]

I do, but how far to the bottom of the hit list when you are up there above the top👿 must look out for my 'tickling stick' . Hel.

[Spittal9 in reply to DorsetLady]

I’ve seen two GPs in the new practice and both have been very understanding and appear knowledgeable about PMR. So I’m happy to discuss things with them. Was recently put on praxilene, aspirin and simvistatin for intermittent claudication in my legs. Now have issues with my gullet and nurse said it’s due to the aspirin and the pred. It doesn’t rain but it pours!!! Aspirin and lansoprazole changed to something else to help with this.

[DorsetLady PMRGCAuk volunteer in reply to Spittal9]

Unfortunately for some people, initial medication just leads to more medication to counteract the first lot!

[123-go in reply to DorsetLady]

Etc, etc.

[jinasc in reply to Spittal9]

Simvastin, read the side effects and if you really need a statin ask your GP for one that does not have the possible side effect of 'aches and pains'.

It does pay off to read the paper that comes with your meds for possible side effects.

It was a cardio guy who took a PMR patient off statins and told her why............

BTW, if you have been yo-yoing as PMRpro says, then adding Methotextrate when the pred has not had a proper chance to do its work.

Metho is a steroid sparing agent..........so I would wait but that is a personal decision.

Reading your profile and subsequent stuff, forget the Rheumy and I would join in with DL stick with your GP.

[Spittal9 in reply to jinasc]

My last GP was going to put me on a statin about a year ago but at that time I was also taking an anti depressant. I was given the choice of which one I wanted to take, as they said both together would not be good. I chose the anti depressant. Been off the anti depressant since the beginning of the year. I actually do remember a time when I didn’t take medication lol…

[jinasc in reply to Spittal9]

Is your cholesterol high...... if so try this Porridge and a whole orange for breakfast each morning. Got to be a whole orange and not juice and proper porridge.

ncbi.nlm.nih.gov/pmc/articl...

Stroke Clinic put my Cousin on it and the level dropped down to normal within six months. She still has it for her breakfast every day and when she went into care I talked the manageress and they agreed to continue her breakfast. I understand they are also encouraging others to try it.

PS: PMRpro explained, somewhere on here about why the Orange I as never knew why.

[Spittal9 in reply to jinasc]

Yeah, my cholesterol appears to be higher than it should be. I’ve been put on the aspirin, statin and praxilene to help with the narrowing of the arteries in my legs.

I love porridge and orange juice so this would be an easy one for me. Thank you!

[PMRpro Ambassador in reply to Spittal9]

It is a whole orange you need, not juice. The secret is in the fibre in the porridge and orange which helps remove the cholesterol.

And reducing the dose at more than 1mg a month has been found to be predictive of flares. Why are they so impatient!!!

[madhouse1 in reply to PMRpro]

They’ve got me reducing 1mg every three weeks 😳

[PMRpro Ambassador in reply to madhouse1]

It's fine if it works and it probably will work at higher doses. But below 10mg you should get slower - not faster. Not out of bloody-mindedness but because it works better. Not more than 10% of the current dose and monthly at most. That isn't from we patients, though we know it works better, but from experienced endocrinologists who have studied it.

[madhouse1 in reply to PMRpro]

GP keeps pred tabs literally counted our to the day absolutely no spares for a flare so I gave no choice but to stick to what Rheumy says. GP can’t over rule the consultant but isn’t happy amd has got me an earlier app with Rheumy fir this coming Friday so watch this space! I’m struggling to walk as the pain in my right thigh is awful and pain in shoulders is too. Stairs are a nightmare and housework being done is minimal.

[Spittal9 in reply to madhouse1]

I hope you get on okay on Friday. It’s maybe a good thing that you are seeing the Rheumatologist so soon, as you are in so much pain. I had managed to build up a little stock of 1mg tablets over time, but recently ran out of 5mg tablets and had to use the 1mg until I got a new prescription. So not got too many left now.

[madhouse1 in reply to Spittal9]

Thank you. I hope so too. Not a chance of a massing any spares with the GP I have. It’s as though they’re paid for out of her pocket. No understanding of this condition at all. Another GP has arranged early app so will stick with him if I can xxx

[PMRpro Ambassador in reply to madhouse1]

"GP can’t over rule the consultant " - oh yes he could. And he could seek a different referral - not easy at present, but possible.

Housework? What's that!!!

What sort of thigh pain and where? Have you at least had an x-ray? Are you on alendronic acid?

[madhouse1 in reply to PMRpro]

Top of the femur in the thigh muscle when weight bearing or bending. It is just as painful touch the area too. I was on AA from October 2019 until June this year Shen X-rays of hips and shoulders and Dexa of left leg said all was ok do stop taking it. The pain is like a really bad bruise being pressed.

[PMRpro Ambassador in reply to madhouse1]

Down the outer aspect of the thigh? Can't lie comfortably on that side? Sounds like greater trochanteric syndrome (formally called trochanteric bursitis). It is often part of PMR. Resting obviously, try icing at intervals. But a steroid shot works well. Or a bit more oral pred

Sometimes there are stretching exercises that will help but in PMR it is fed by the autoimmune part so is more difficult.

[madhouse1 in reply to PMRpro]

Does Vit D deficiency tie in with PMR? My levels some years were very low my lovely (now retired) GP was shocked how low it was put me on a rescue dose for best snd of a year as I was ok to come off them in the November but he said to stay on until spring. I didn’t know if there was a connection. The lower leg pains cleared up and energy improved. I’ve always taken a vit D supp since. Lower leg pains are back and pain around kidneys since reducing on Rheumy’s instructions. Generally rubbish do wondering if need increase of pred which isn’t possible.

[PMRpro Ambassador in reply to madhouse1]

It can cause similar symptoms to PMR so is a differential diagnosis (or should be). If youhave once been low, vit D needs to be checked annually at least and preferably in the spring when it is likely to be at its lowest. I take 4000IU a day all year round and that seems to keep me at a good place.

[madhouse1 in reply to PMRpro]

I’ve had Vit D checks and it’s been ok since but I still take 3000IU a day as I can tell when I haven’t had them. A good multivit too and eat well. Lots of fresh fruit and veg but not cakes,crisps, choc, biscuits etc. Not much appetite so have to make myself eat little and often but could go all day with nothing since reducing pred. Hey our docs are so brill! I ordered 56 x 1 mg tabs and they've sent me 14 x 5 mgs. As they can’t take themBack and swap it looks like I’ve got myself some spares as 3 mgs can’t be made out of 5mgs🙈. Emailing now for what I asked for. They’re really not on the ball as to what’s going on as the label in the box says:- one to be taken daily (total 8mg) for two weeks. Total dose 9 mgs 😩🙈.

[PMRpro Ambassador in reply to madhouse1]

Think that is a proper complaint topic - getting doses wrong/impossible to create and poor instructions can kill. Reduces their workload I suppose!

[madhouse1 in reply to PMRpro]

Soon be out of work if we followed what they instruct! I’ll have words when I’m lucky enough to get a FTF appointment

[madhouse1 in reply to PMRpro]

Housework!!!!! Just essential hoover as have little dog who malts so dog hairs need to be hoovered up at some point in the week. Nothing else gets done as I just can’t do it. Never thought I’d be like this but have to just go woth the flow.

[Doraflora in reply to PMRpro]

Sorry if I sound thick, but do you mean to grate the peel onto the porridge, or do you mean just eat the orange flesh?

[PMRpro Ambassador in reply to Doraflora]

That wasn't me, it was jinasc who said that. I imagine she used it by grating the zest, it would add nice flavour too. If the pith was included it is quite bitter.

[Hidden in reply to jinasc]

Ref: Whole orange . Does that include the skin? I love oats

[PMRpro Ambassador in reply to Hidden]

In the UK probably not!!!! If you (like me) like the skin, make sure they are untreated/organic ones or scrub ordinary ones thoroughly

[jinasc in reply to Hidden]

Never thought about that so I never asked the question.

I peeled them for her. I always washed the peel and then grated it and sprinkled it on the porridge making sure not to get a bit of pith in it. I also grated then used by adding it to anything suitable when cooking.

[Spittal9 in reply to jinasc]

I was put in a low dose at diagnosis. It was eventually upped by Rheumatologist to 17mg. I was nearly at 10mg 6 weeks ago and then this flare hit and I upped to 15mg. Now at 14mg. So I think in his eyes that took me back to just about where I started. He said he would like me to decrease by 1mg a month or faster.

[patrickd]

I understand where your doctor is coming from. Steroids are a miracle at helping inflammation but the side effects are horrible and they are just not good for your body with long term use (more than 10mgs for a long period of time). I am a Steroid "lifer" meaning I take them and will the rest of my life but at just a maintenance dose of 4-3mgs daily (I rotate my dose and try to keep it as low as possibly can). NO ONE wants to hear this BUT To be honest...at high doses (80mgs), I've had Diabetes, high blood pressure, Cataracts in both eyes, hallucinations, ringing in ears, (psychotic eposides) all disappeared once my dose was finally tapered down. Rule of thumb is go LOW and go SLOW. It's taken me months to get to the dose I'm at.

[Spittal9 in reply to patrickd]

Sorry to hear how you have been but glad to hear things have improved for you. I understand the complications that can occur from the Pred but I also remember what it was like when PMR came knocking on my door two years ago and I ended up in hospital. Will I get off them eventually? I hope so but I realise the need for them too. This site has been invaluable to me and I’ve learned so much on this journey.

[piglette]

I have managed to get through four rheumatologists, 2 x NHS and 2 x private. I am now back with my GP who I have not actually seen since May 2016, although we have the odd argument about bisphosphonates on the phone. I am against, he is for them!

[Spittal9 in reply to piglette]

Hopefully I’ll get a chance to speak with my GP about it all…

[piglette in reply to Spittal9]

In fact with PMR I have decided we don’t really need a rheumatologist unless there is something abnormal going on. Even then I am not sure I would trust some of them!

[Spittal9 in reply to piglette]

We see them so seldom and not always good outcomes.

[PMRnewbie2017 in reply to piglette]

After working with them for 30 years I don't trust any of them. They bury their mistakes, pharmacists just get sued and struck off!!!!!

[Sophiestree in reply to PMRnewbie2017]

And why does this not surprise me...

[piglette in reply to PMRnewbie2017]

I have often wondered what type of person becomes a rheumatologist. I have always thought they can get away with not doing much but just show sympathy and give out pills, although a lot of them don’t even do that.

[PMRpro Ambassador in reply to piglette]

I think a lot are lazy, thinking that there won't be much emergency duty and weekends. Don't know about the UK, but here the rheumies have to do their turn as physicians on call in A&E! But a lot of their apathy stems from the fact they went to medical school to be able to save lives - and that doesn't come to the fore in rheumatology as there aren't many cures ...

[piglette in reply to PMRpro]

It really is a pretty cushy job in my opinion. I reckon I could do it!!

[PMRpro Ambassador in reply to piglette]

I couldn't be a good one - immunology just makes my brain hurt now ...

[Coffeebeans in reply to PMRpro]

Immunology is where intuition goes to die ...

[PMRpro Ambassador in reply to Coffeebeans]

[piglette in reply to PMRpro]

I didn’t say I would be a good one, probably on a par with a lot of them though, which is not very impressive. I can start tomorrow!

[PMRpro Ambassador in reply to piglette]

We could go into partnership ...

[piglette in reply to PMRpro]

Yes, go private!

[Constance13 in reply to piglette]

You'd earn a lot for doing very little that's sure.

[Constance13 in reply to piglette]

What is it with rheumatologists? They seem to study for years on end and don't know how to treat patients when it comes to it. Or is it that they don't believe there is such a thing as PMR?!?

[PMRpro Ambassador in reply to Constance13]

Maybe it attracts the very clever ones who fancy the autoimmunity aspect but who have poor social skills/empathy. Or my other theory is it is the lazy who think they won't have much in the way of antisocial hours and emergency call-outs, which has been the case in the UK at least, Here they take their turn on the ED on-call rota.But yes - I have said for years that PMR is the poor relation that is magically "cured" with pred and goes away in 18 months to 2 years. Maybe the realisation that it is more complex and longer lasting in the majority of cases will give it a bit more street cred!

[Constance13 in reply to PMRpro]

"street cred" - I wonder!

[piglette in reply to PMRpro]

I think it might be both the academic, lack of empathy ones and the bone idle ones.

[PMRpro Ambassador in reply to piglette]

Rheumatology is the new surgery for the non-empathetic ...

[piglette in reply to PMRpro]

Perhaps they could have that as their slogan. Become a rheumatologist the new surgery for the non-empathetic ...

[PMRpro Ambassador in reply to piglette]

Now THAT made me laugh out loud ...

[piglette in reply to PMRpro]

😁😁😁

[madhouse1]

What a wonderful GP you have, you lucky lady xx

[Portopetro]

My rheumatologist said exactly the same . Didn’t want me on long term steroids and wanted me on methotrexate instead . After discussion with my son who is an anaesthetist and my daughter who is a physio with a lot of rheumatology experience . They both said that methotrexate was far better for my body long term than prednisone . I’m now on week 11 on the methotrexate and feel so much better. Felt sick at the beginning but not any more. I have also tapered down to 2.5 prednisone and will be off it within the next month.Just wanted to give my experience with methotrexate .

[Spittal9 in reply to Portopetro]

Thank you for this! I’ve read so much that is not positive about it, it’s good to hear this. Glad to hear that it’s working for you!

[Sharitone in reply to Portopetro]

May we ask how much mtx you are on? Just had to increase mine😔

[Portopetro in reply to Sharitone]

I started on 10 mg which is lower than the normal dose as my consultant wanted to see that you I could tolerate it . I have had blood tests and all is okay so have now been prescribed 15mg which I think is the standard dose. More blood tests this week . It does take up to 12 weeks to really kick in and I started to feel so much better after about 10 weeks. Hope that helps.

[Sharitone in reply to Portopetro]

Thanks!

[Viv54]

I have a very similar thing going on atm, except my GP seems to go on the markers , ive got a 30 minute consultation with My Rhumi on Tuesday, ive waited almost a year since my last one due to covid . She will be shocked to see im still on them, i just want to get to the bottom of this terrible fatigue , i feel for you. Fingers crossed we get some answers ! Best wishes Viv🌸

[Spittal9 in reply to Viv54]

I find it frustrating when there seems to be such a lack of knowledge from the ‘experts’. Trouble is they are the ones that control the prescribing. I will talk it over with my GP. The rheumatologist has sent me my next appointment and it’s six months away. Hopefully I won’t have to deal with him again, as we have moved to a new health board area and he has referred me to their rheumatology department.

I hope the problems with the fatigue get better for. It is so debilitating!

[RichardC]

Keep fighting - the Glasgow group is thinking of you !

[Spittal9]

Hi Richard! Thank you! A lot has happened since we last met. Have the Glasgow meetings been able to start up again?