Should I see a Rheumatologist?: I was diagnosed... - PMRGCAuk

PMRGCAuk

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Should I see a Rheumatologist?

Chuz
Chuz

I was diagnosed with PMR in January. Started on Prednisolone 30mg and now down to 20mg. I am also on blood thinners, anti cholesterol, stomach protection and now Calcium and Vitamin D with Alendronic acid. Would love to reduce medication particularly the Alendronic Acid. Should I see a Rhumotologist to review my condition and medication? I want to know If I am on the right track with treatment plan. I am still active and not in pain. The only symptoms are cold calf muscles and aching/sore wrists in the morning.

40 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Not necessary to see Rheumy if PMR is straightforward and GP able to treat.

Did you have a DEXA scan to check for osteoporosis before you started AA to see if really necessary? If not, then ask for one, your bones may be good enough and only need VitD/Calcium supplement. Plus if you take VitK2 (not prescribed) It helps with the absorption of calcium. Also don’t take VitD/calcium within 2 hours of taking Pred...you don’t get the best out of either of them if you do.

We’re you already on blood thinners and cholesterol meds pre PMR? Not usually added in, unless you have specific problems.

Aching/sore wrists sometimes are an indication of PMR - have you had it all the time or recently following a reduction?

This might give yiu some more info - healthunlocked.com/pmrgcauk...

Chuz
Chuz in reply to DorsetLady

Thanks for your reply.I haven't had a Dexa Scan. I was put on blood thinners and cholesterol tablets following a thorough investigation, scans and visit to the TIA clinic. I had a very brief flickering in corner of left eye that lasted about 10 minutes. I was concerned about GCA. Although they couldn't find any evidence of a TIA I think they are just playing safe to avoid possibility of a stroke. I have had brain scans, ultrasound and eye scans. Very thorough. They didn't think I had GCA.

The aching wrists have come on since taking the steroids. Doctor doesn't think it is a symptom of PMR more like to be repetitive strain injury.

I shall speak to doctor about getting a Dexa scan as I am nervous about Alendronic Acid. Quite happy to take calcium supplements.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Chuz

Yes agree about AA - no point taking it if not necessary. I took it for 4 years without an issue - but because I needed it.

Are any of your meds giving you particular problems? I had a helpful review with my pharmacist who had in depth knowledge of all my medication and side effects. I was able to drop a couple of things. I have refused Alendronic Acid on the basis of two good bone scans ( dexa) and no sign of Osteoporosis. I would rather tackle Osteopenia with diet, exercise and supplements - it can be done.

Hear hear

Chuz
Chuz in reply to SheffieldJane

Thanks for your words of wisdom. I shall ask my GP about getting a Dexa scan as I am nervous about Alendronic Acid. It seems to have all sorts of potential bad side effects. Happy to go down the diet route if I am not at risk of osteoporosis.

I would encourage you to see a rheumatologist as they have the most experience dealing with PMR. Your medications are similar to what I am on, with the exception of the Alendronic Acid, and I have slowly (18 mos.) tapered to 2/1 mg of Prednisone. Your sore wrists could be a PMR symptom or overuse, depending upon your activities. Best to go slow on taper and consult your rheumatologist.

piglette
piglette in reply to RiverKings

In my case that is definitely not true!

Yellowbluebell
YellowbluebellAmbassador in reply to piglette

Nor is it the opinion of far.too many people on here. A bad rheumy knows nothing helpful and considerably less than a good gp.YBB

Ok, there you go: different opinions based on the quality of the doctors you have. I’m in US, and actually have a very good family practice doctor who first diagnosed PMR but sent me to rheumatologist nonetheless for confirmation and treatment. He also has been very good. Depends on who you draw and their experience with PMR and willingness to listen, in my opinion.

Yellowbluebell
YellowbluebellAmbassador in reply to RiverKings

My gp diagnosed pmr and referred me due to my age and my rheumy is also brilliant but there is no need to see a rheumy if you have a good gp. Pmr does not need a referral unless it is complicated. My rheumy sent me back to my gp saying unless I had a problem my own doctor was more than capable of dealing with it and they are. As you are in the US its different but in the UK we dont all get a referral just because we have pmr. From what we have heard on here the quality of doctors varies just as much in the US as it does in the UK so slating the quality of our doctors is a bit of a sweeping comment. YBB

Yes!! If you have an autoimmune disease the GP in the states automatically sends you to the rheumy. When I was diagnosed and went from ambulance to hospital to opthmologist....she put me on prednisone but said, "Your rheumatologist will regulate your steroids." The GP or ophthalmologist won't even prescribe the steroids. I guess that is why everybody wants to be a specialist in the states! They wouldn't make so much $$ with a national health system ... same in Canada as the UK.

I happen to like my rheumy, but mainly because he does things UK style now, but it means I have to see three docs. Before the virus, I spent many days a week at appointments.

Yellowbluebell
YellowbluebellAmbassador in reply to Grammy80

Its the opposite here. You only get referred if your pmr is an issue but with GCA you get referred which is understandable considering the risks associated with it. We really don't need to see any specialist with pmr as long as its being straight forward! Fortunately we get free treatment but I have learnt on here even if you see a rheumy privately and pay a huge amount of money it doesn't mean they are any good. Glad you like yours. Mine was very good but only saw him the once as my gp is very good. Xx YBB

What I like best about my rheumy...was when after heavy prednisone didn't help much and I didn't respond quickly to prednisolone, he send me for a consult with one who had more experience with GCA. He didn't let his ego get in the way.😎

My rheumy is excellent, supportive and let’s me follow my own judgement. And she is the gateway to further medication and advice should I need it. We’re obviously lucky!

PMRpro
PMRproAmbassador in reply to RiverKings

You may be in the US - believe me, we have a lot of members on the forums who also live in the US and have had dreadful experiences with rheumatologists but struggle to find a GP who will take responsibility for their care. In the UK and much of Europe the ongoing day to day care is done by GPs/PCPs with recourse to specialists where required. I also don't feel a wait of more than 6 months to see a specialist is exclusive to the UK - and I know no-one in the UK who has to travel for hours to see their doctor. We have American members who have had both experiences.

Chuz
Chuz in reply to RiverKings

Thanks for your reply. I shall ask my GP if I can see a rheumatologist and Dexa scan to make sure I am not at risk as I don't like the sound of all the Alendronic Acid side effects.

Hidden
Hidden in reply to Chuz

There you are! Wise decision!

Hello! I have GCA, not PMR, but because of a complex medical history I am also on a cocktail of meds as you so appropriately put it. It sounds like you are doing well from what you say with minimal discomfort. I'm a big believer in peace of mind and if you would feel more comfortable seeing a specialist, I say do it.

I take prednisolone, TCZ, stomach meds, Aldronic Acid, meds for other medical conditions, vitamin supplements...but I feel better than I did almost a year ago at the onset on GCA. This is just me personally, I like to have my blood checked but have certainly learned symptoms matter more than anything.

I was diagnosed last August, so it is almost a year. These are long term illnesses and I am happy with the progress I have made in these last 11 months.

It never hurts to review your meds and get a fresh opinion....but you know your body.😉

Chuz
Chuz in reply to Grammy80

Thanks for your wise words. I shall ask my GP if I can see a rheumatologist to review my case and make sure I am on the right track.

PMRpro
PMRproAmbassador

Re seeing a rheumy: depends on the system - in the UK rheumatolgists tend to be reserved for problematic cases. Purely practical really - I'd rather be managed by a good GP than wait months to be seen. And that happens in the USA too. A good GP is preferable to a poor rheumy!

Chuz
Chuz in reply to PMRpro

Thanks for your reply. I shall ask my GP about the quality of local rheumatologists and getting a Dexa scan as this could see if I am vulnerable to osteoporosis.

Hi I am basically on the same meds except have been diagnosed with Acute Kidney Injury. I have been taking Omnipeazole as prescribed by hospital and GP. In the last year my kidney function has plummeted as it was not monitored I have had a rare reaction. I have been in hospital x2 in the last 2 months and had a biopsy which shows kidney damage. I haven't felt unwell. My warning is ask for a blood test to check kidney function in the first 6 months on omniprazole you might save yourself a while lot of problems! PS the hospital at Royal Stoke have been amazing with me.

Chuz
Chuz in reply to TheBund

Thanks for your reply. I'm on Lanzaprazole for my stomach. I shall ask about kidney function as recently I have been finding I need to pass water urgently!

I am 75 and take Furosemide (Fluid retention) first thing then Lansoprazole(Stomach protection) 20 mins before breakfast. I take Edoxapan (blood thinner) and Bisoprolol (I have AF) after or with breakfast. I don't take my Pred until evening. I sleep well and wake up pain free.

I have just reduced to 14 mg and will go down to 13 in a weeks time. I have a super doctor who seems to know a lot about PMR and was diagnosed through blood tests.

I have never seen a Rheumatolgist. I do take Alendronic Acid one a month but no other supplements.

Did you have a bone scan before beginning Alendronic Acid?

Hidden
Hidden

Hi Chuz ... you seem to have gotten lost in this discussion.

Yes. A rheumatologist is best suited too manage your condition. They are specialists who have better knowledge as it relates to various PMR treatments, special injections if needed, how drugs and supplements interact with each other and more. They give the best advice as it relates to tapering too. That’s why they are specialists for this and other rheumatoid conditions.

I would agree with seeing a rheumatologist, simply on the argument that two heads are better than one (well, we hope so). I agree that a good GP is all we need, someone who knows what they are talking about. But my impression from folk here is that many GP's haven't much of a clue - and this is backed-up by my reading of research papers. The worst scenario is a bad GP and a bad rheumatologist - and I suspect that is not uncommon. But we all here are making things better!

I feel much better equipped to take control of my PMR medication after reading experiences here (e.g. very slow tapering) and I would feel more confident to argue my case with my GP than my rheumatologist - and I suspect that the rheumatologist may refer me back at the next appointment.

Strictly no Vit K2 as this interferes with blood thinners

KellyInTexas
KellyInTexas in reply to jsheard

This is not quite the correct way to handle vitamin k 1 or vitamin k2.

Warfarin in an Vitamin k antagonist.

It simply needs to be the exact same amount every single day at approximately the same time every day.

I would recommend any patient get counseling from a registered dietitian. From there a hematologist can answer more specific questions.

I was not allowed to leave the hospital after my first clotting event and diagnosis of a severe clotting disorder until a registered dietitian came to my room.

I must say it was brief and quick. I was given a list of foods grouped into categories of low, medium, and high values of vitamin K.

( and the list of surprises... like cranberries, grapefruit, licorice, and olive oil.)

And green tea- will very much lower the INR.

Catch Atkins out of Scotland has a book and blog- Eat on Warfarin

I find it helpful.

Are you on warfarin jsheard? I can help you if you need further resources?

Hidden
Hidden in reply to KellyInTexas

I've learned my lesson. My healthy lifestyle class told me to eat more green leafy stuff so I ate a lot of it. When it came time for my INR it was almost like I wasn't taking warfarin. My instructions were revised such that I should eat a consistent amount. I went back to eating my usual amount which isn't very much. 😃

Hidden
Hidden in reply to KellyInTexas

Someone said K2 doesn't have much of an effect on INR. I was going to try K2 to test it. I bet you would know so I will ask you.

KellyInTexas
KellyInTexas in reply to Hidden

Honestly, I don’t know very much about K2.

It’s meant to be very good against bone calcification.

PMRpro
PMRproAmbassador in reply to jsheard

The only anticoagulant that would be of concern would be warfarin/coumadin - and even then, providing that the daily intake is consistent and the INR is adjusted for that inclusion in the diet, it is not a problem. What IS a problem is inconsistent amounts of any food with high levels of vit K1 - binging on spinach today after a week or two of none, for example.

But it is said that vit K2 does not significantly affect blood clotting - vits K1 and K2 are different substances in the same way the various B vitamins are also different,

Hidden
Hidden in reply to PMRpro

"Although most of the attention in this area focuses on food sources of vitamin K1, it may also be important to monitor vitamin K2 intake.

One study showed that a single serving of natto rich in vitamin K2 altered measures of blood clotting for up to four days. This was a much larger effect than foods high in vitamin K1.

Therefore, it is probably a good idea to monitor foods high in vitamin K1 as well as vitamin K2 if you are on the blood-thinning medication warfarin."

healthline.com/nutrition/vi...

A word of caution re: blood thinners and steroids:

If you are on warfarin, ( known often in the USA as brand Coumadin) please be aware that pred can cause INR to have dramatic fluctuations.

If you are on a NOAC / DOAC ( novel or direct Oral Anticoagulant, Like apixiban (eliquis) ) or rivaroxaban ( xeralto) it will be a fixed dose, and you should not experience these swings.

However, these meds are weight dependent . Do keep an eye on changes in your weight as your dose may need to be adjusted.

Hopefully ( I assume) your doctor has explained this to you?

I am on warfarin,prednisolone,2xBP tablets,bisoprolol,statins,omeprazale,alendronic acid and the vit D and calcium,I take my own INR test at home when it’s a little high I make a smoothie with spinach which brings it down ,thank you for your offer of help KellyInTexas

KellyInTexas
KellyInTexas in reply to jsheard

Perfect you have a coagucheck. Very good!

Auto correct did a number on my sentence earlier:

Eat on warfarin by Cath Atkins is the book.

Yes my coaguchek is a god send ....it’s helped me out so much,I have checks at the INR clinic ,but sometimes they only see me every 3months ,so when my INR was 5.2 it probably saved my life !!! Had to get it down quick,so they told me to eat spinach !

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