PMR and diabetes

[HelenLeppard]

Diagnosed in April, I also started on 15mg, 2 weeks later reduced to 10mg, had a flare up! Went back to 15mg and I am now reducing at 1 mg every 2/3 weeks, I am currently on 11mg. My pains have come back, but not like before taking steroids. I am very tired, I also have diabetes so my GP wants me to come down ASAP to help with the blood sugars that have increased. I have not been referred to a consultant, should I be? Interesting in that you should stay in 10mg for a year, but this will affect my diabetes. Confused what to do!

[DorsetLady PMRGCAuk volunteer]

Hi Helen

Sorry to hear about your problems, were you diabetic pre PMR, or has the Pred brought it on? Your second reduction plan sounds more sensible than the first thankfully- no great surprise you flared.

Unfortunately Pred can affect diabetes, but there are lots of people on here who seem to manage it okay. Can understand why your GP wants you to decrease Pred ASAP, but it's not quite as easy as that, it's a fine balancing act at the best of times without adding in another condition.

Probably the majority of people see a Rheumy (assume you mean that specialism rather than Diabetic), but very often if the GP is confident he/she can cope, they don't bother to refer you. Think the problem is that the Rheumalotigy Dept in most hospitals is overloaded so GPs don't refer, but you are entitled to ask.

Hopefully, someone who has diabetes will be able to offer more advice.

[polkadotcom in reply to DorsetLady]

Far as I'm concerned it's just common sense..........yes, my sugar levels go up when I am on high doses of steroid but it goes down as the steroid levels reduce.

If you reduce carbs while on high doses of Pred this will help, although reducing carbs is sensible for anyone on steroids anyway, to help combat weight gain.

I know that all the diabetes organisations are still pushing the need to eat more carbs (I do think one has taken this matter on board, but can't remember which one) which in my view is wrong, in fact it isn't helpful at all for someone on steroids - you will resemble the Michelin man in no time. It's not helpful for any diabetic anyway.

[HelenLeppard in reply to polkadotcom]

I have actually lost 10 pounds! I have cut out some carbs, but still having a little each meal, my GP said as well to cut carbs down a little, having a blood test next month, so will see then!

Thank you

[PMRpro Ambassador in reply to polkadotcom]

The American Diabetes Association has recommended low carb as a means of managing diabetes - finally happened a year or two ago.

As you say - it's a no-brainer, why on earth ADD more of the substance the insulin is needed for? It merely means the drug companies make more profits as they sell more of their drugs! Now why would they encourage that...

[HelenLeppard in reply to DorsetLady]

Thank you, yes I was diabetic before PMR. My GP has been great, and diagnosed me immediately, she has said just come down as I want to, but slowly. From reading on here that seems to be just as you feel to do so.

Thank you

[piglette in reply to HelenLeppard]

If you have a good GP you should not need a rheumie unless there are problems when your GP would refer you anyway. They say that PMR can be managed at primary level in the majority of cases. My rheumie was useless he used to take my blood pressure and move my arms up and down, then talk about his holidays.

[HelenLeppard in reply to piglette]

Oh dear that's not good Piglette. My GP has been great so far. thank you

[piglette in reply to HelenLeppard]

I think I have been very unlucky with my medics. My GP has not actually seen me since 2014 but has talked to me on the phone if my blood results increase, she usually just asks me how I feel!

[HelenLeppard in reply to piglette]

Oh dear, that is not good at all!

[MARION7 in reply to piglette]

That's upsetting. Don't you feel you need a one to one appt so that you can have a proper health check with your GP. Take good care.

[piglette in reply to MARION7]

I am supposed to be seeing a rheumatologist at some point after a phone call with my GP, who seems to know nothing about PMR. I had a letter from NHS central saying I can book online, so I tried that and failed with errors and general frustration, in the end I phoned them up and was told that my area had not updated the appointment system! I should get a letter with an appointment apparently this week, so far it has taken five weeks with no appointment. Goodness knows when I will actually see a rheumatologist. My previous one was private and has now retired. I have not seen him since 2014.

[HelenLeppard in reply to piglette]

I would follow that up Piglette!

[piglette in reply to HelenLeppard]

I am seeing a new GP this week and will try and get his help.

[OrwellMan7]

Hi, similar to you I have type 2 diabetes which was well controlled by exercise and diet , for years. Had PMR for maybe a year before diagnosis by rheumy in December. Then onto the steroid journey started at 15mg but increased to 30 due to a severe flare. The blood sugars went up as exercise was not possible, and weight increased. GP put me on Metformin to control the blood sugar which has worked. Now on 10mgs and have started a very gentle exercise regime of about 40 minutes daily, just enough to get warmed up really, and a sit in a warm jacuzzi for an hour. Important not to stress the muscles which will trigger a relapse.

I found the metformin upset my stomach every 3 or 4 days, explosive flatulence and so on. The practise nurse changed it to another type which worked to a degree, cutting out wholemeal bread solved it.

So if you are happy with your GP , you will get invaluable advice from the great people on this site, especially on reduction, then get the agreement of your GP for you to manage your own symptons. Get lots of rest, some gentle exercise and avoid stress. Best of luck.

Dave

[HelenLeppard in reply to OrwellMan7]

I am lucky my GP said that she will leave it up to me and how I feel. Thank you for your reply, this is all very helpful and makes me feel not alone!

[Telfordian]

Did Polkadot say "pushing to eat MORE carbs"? Either she's got it wrong or I've misread her.

[PMRpro Ambassador in reply to Telfordian]

Many doctors tell their diabetic patients to eat a standardised amount of carbs, an amount that is far more than I have eaten for years and years and I'm not diabetic! At one point I know that diabetes nurses/dieticians were advising several slices of bread or the equivalent! That was what polkadotcom probably meant, "more" than the amount we suggest for combating weight gain when taking pred.

[Tc70g]

PMR diagnosed February 2015, started on 20mg just down to 3mg. Diabetes due to Pred. Diabetes.co.uk have a free programme for low carb diet and a very useful forum too. Lots of recipes to make it easier. I am steadily loosing the weight l gained before diabetes diagnosis. I do test my blood glucose and low carb definitely works for me. You may need more diabetic meds to deal with higher blood glucose but this should reduce when the Pred. dose reduces. It's better than risking health problems caused by high blood glucose in diabetes.

Tiredness can be a problem but try to rest when you can and don't expect too much of yourself, it's early days. Personally I would be happy with a GP if he was informed as my consultant is not brilliant, but that's another story!

Good luck, use the community here and be kind to yourself.

[Shastring]

Hi Helen, my dr has been reducing me every month by having me cut a pill in half. I'm now down to. Twelve in a half as I take one ten mil and half of a five and at end of month I eliminate the half and just take ten mil for another month til I see him again. I assume this is the slow taper method and so far no flare just some very minor aches but nothing major.

As for the sugar my blood normal thus far even though I'm eating more sweets, trying hard to watch but very hungry constantly, I'm normally under a hundred lbs and gained seven since going on the pred in February.

How r u reducing by the 1mil, do u get the pills in that dose? I have 5and 10 mil prescriptions so dr has me cut in half.

I to am tired especially in afternoons but I get up every single day at 5am to take my 10 mil and then take the rest at 5pm, per Dr Orders and it seems to work, no problem falling asleep either.

Good luck and keep us posted.

Sharon

[HelenLeppard in reply to Shastring]

Hello Sharon,

I have 5 and 1mg tablets. I come down 1mg every 2/3 weeks. I also get up about 5.30-6am, I can be falling asleep by 10am and usually fall asleep over my computer after lunch. I have little problems getting to sleep. I did not have a good day today, typing this, my arm is falling off!

Not been told to split the dose am/pm. Seems strange to cut your tablets in half!

Thank you Helen

[Shastring in reply to HelenLeppard]

Helen are you in the US? I am and my Rheumy told me to just cut the smil in half, next week Ill only be on 10 mil and very anxious about a flare, praying I dont get one.

I was tapered at 2&1/2 mil and doing ok now it will be a full 5 mil so who knows what to expect. Ive only been on the pred since Feb 1st so time will tell.

Sharon

[HelenLeppard in reply to Shastring]

Hi Sharon, I am in the uk and have been on pred since April. It seems to be trial and see what happens. I really hope you do get a flare up, good luck.

Helen

[Hidden in reply to Shastring]

Sharon,

Did I read your note right? Are you going to go from 10mg to 5mgs Yikes. At ten you have to do the dead slow.

I did as my doc said an plowed right past the pain till I got to 7 mgs then I had a flare which I could not ignore and ended back at 20 mgs to get under control. So now I am at 16 AGAIN and doing the dead slow working towards 15mgs now.

Good luck

God bless

Linda

[jinasc]

Just placed PMR&GCAuk North East Support's summer newsletter on our website.

This link will take you to an article called

Demystifying Diabetes

In relation to Polymyalgia Rheumatica and Giant Cell Arteritis.

pmr-gca-northeast.org.uk/as...

You can download it and read it at your leisure.

My name is Karen Craggs. I was kindly invited by the

North East support group for PMR&GCA, in my capacity

as Lead Dietitian for Newcastle Diabetes Service, to

talk about the link with PMR, GCA and how they link

to Diabetes. But most importantly, how to support the

self-management of blood glucose levels through diet

and lifestyle, and the myriad of medications that can

accompany this unwelcome diagnosis.

You can look up Karn's credentials on the internet. Karen is one of the 25 top leading dietician specialists, we are fortunate to have had Karen come and talk to our members.

Thought some of you might be interested.