Advice please!: Hello all, I was diagnosed with PMR... - PMRGCAuk

PMRGCAuk

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Advice please!

Ezio100
Ezio100

Hello all, I was diagnosed with PMR in July this year following a badly infected surgical wound. I was amazed how quickly symptoms appeared, day 1 some ache in right shoulder, Day two both shoulders and upper arms painful, day 3 agony in arms, shoulders, elbows, knuckles, hips and back. Couldn’t turn over in bed without pain which made me cry out ! I am a 53 year old male, previously overweight but fairly fit. Go started me on 40mg of Pred and told me to taper by 5 mg every 2 weeks and said cutting from 5mg to 0 would be difficult.

I got down to 15mg and hit a brick wall with re emergence of symptoms which forced me to increase to 20, then 25 to settle things again. I still feel I’m on the ‘edge’ as I have slight aches in shoulders and knuckles even on 25mg! I seem to be on a much higher dose than many appear to have started on which scares me!

I haven’t been to the gym, cycled or hit 10k steps for months although I’m working still, but have noticeably less energy. The Pred has made me feel I’m always hungry and I have gained weight as I can’t stop eating! I was diagnosed with type 2 diabetes at the same time which has been hard to get to grips with due to continued hunger pangs!

My go has not followed up and I haven’t seen her since diagnosis, should I go back and tell her about Pred increase? Is 5mg too much cut each time and is it too early to think about reducing? How long does this acute phase last? Or is it always like this!

When will I get some energy back?

Any advice would be appreciated please. Thanks

14 Replies

I’m sure someone else with much more knowledge than me will give you some amazing advice. One good thing to regaining your health is finding this site. There’s a wealth of information here and the members are so supportive. I do know you have to find a level of pred that will elimate your pain and then move incredibly slowly to reduce. 5 mg increments seem way too much and way too fast. Be sure to read the responses you get here! Don’t lose heart.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Welcome, and yes 40mg is high starting dose for PMR. Tapering plan is not ideal either - much better to stay at each dose for 4 weeks rather than 2, and although 5mg can be done for GCA patients who start at much higher doses, it’s too big a drop for most PMR patients.

Sounds as if your GP doesn’t have much idea of how to treat PMR, you should be monitored on monthly basis early days just to ensure things are going to plan - which you obviously haven’t - hence the need to increase steroids.

You need to get stabilised and reduce sensibly then you will get some quality of life back - not the same as before, but certainly better than you are now.

You are in this for the long term, although good news is men seem to have an easier ride than women, and with youth on your side it might be easier.

Have a read of this- might answer a few more questions, and then come back with any more it might raise!

healthunlocked.com/pmrgcauk...

Hello, so sorry you’ve been tossed into this alarming situation and, it seems, somewhat cast adrift. There’s going to be a whole bunch of advice coming from others who are experienced with this. You were started on higher than the recommended Pred dose for PMR and dropped way too fast for your body to have a) gone into remission and b) cope with withdrawal symptoms. I’m not surprised you have hit a wall and goodness knows how you’ve kept working. Your doctor really should have done at least one set of bloods to keep an eye on you, especially in view of your diabetes. On that subject I would advise you to get to grips with your diet as soon as possible because you need to try to prevent uncontrolled blood sugars, infection and body stress which could keep fuelling the PMR. The hunger is dreadful I know, but if you cut out carbohydrates like pasta, bread, rice, flours and potato etc it should make a huge difference. I stuffed my face but only on veg and protein and didn’t put on any weight and kept my blood sugars normal. Others have lost weight doing this while on Pred too. This is one thing and a very important one you can take control of.

This is a long term condition and information is power so read as much as you can on this site so you can take control and avoid yo-yoing Pred doses which does you no good. Hopefully you’ll feel less lost and more able to discuss your management with your doctor who sounds like you need to change.

Ditto to what SnazzyD said about what to avoid eating when you are taking Pred. Try to avoid all breads and pastas and rice and sugars . Sounds impossible, I know, and I thought I’d go stark raving mad, but after a few weeks, the cravings disappeared and I wound up losing weight. My blood pressure, blood sugar and cholesterol are better than before PMR. So please do not lose hope.

Also, please find another MD. There are guidelines internationally adopted about how to treat PMR adopted a few years ago. Your MD seems uninformed. rheumatology.org/Portals/0/...

Regarding the type 2 diabetes problem, exacerbated by the prednisone, you need to have periodic blood test of A1C, and if diet and exercise don't control it, go on a drug like metformin. see:

mayoclinic.org/diseases-con...

"A1C levels need to be checked between two and four times a year. Your target A1C goal may vary depending on your age and other factors. However, for most people, the American Diabetes Association recommends an A1C level below 7 percent. Ask your doctor what your A1C target is.

.........................................

Compared with repeated daily blood sugar tests, the A1C test is a better indicator of how well your diabetes treatment plan is working. An elevated A1C level may signal the need for a change in your medication, meal plan or activity level. Management of type 2 diabetes includes:

Healthy eating

Regular exercise

Possibly, diabetes medication or insulin therapy

Blood sugar monitoring "

-------------------------------------

The link from Hindags covers the PMR subject.

So another suggestion to find a better qualified GP to diagnose and follow up your health problems.

Many thanks for all the constructive and supportive comments, I feel I’m not alone with this now! Have GP appointment for next week and will try cutting out the carbs too 👍

PMRpro
PMRproAmbassador

"Go started me on 40mg of Pred and told me to taper by 5 mg every 2 weeks and said cutting from 5mg to 0 would be difficult."

For goodness sake - is it beyond them to look it up and at least get some facts straight? That is NOT how PMR should be managed - and it isn't going to work. Take these to your GP and ask her to read them and consider managing you more in line with them:

rcpe.ac.uk/sites/default/fi...

rheumatology.org/Portals/0/...

She has probably added to your problems by starting you at such a high dose - that is the dose for uncomplicated GCA, up to 25mg is all that should be required for PMR, although larger people need more than smaller ones.

I would have said the same as the others have said - especially the cutting carbs and monitoring your Hba1c levels.

But above all, if she won't cooperate with you and take note of the links I've given you you need to find someone who knows what they are doing - either a different GP or get a referral to a rheumatologist, which is maybe a good idea anyway as it MAY be what is called a reactive arthritis rather than PMR since it appeared so soon after the infection and there are plenty of doctors who would balk at making a PMR diagnosis in a male in their early 50s. And the diabetes complicates it - she's already out of her depth.

Ezio100
Ezio100 in reply to PMRpro

Thanks for that Pro, I do feel she isn’t sure about things, I want to be referred to someone who does!

Bronni
Bronni in reply to Ezio100

Pmrpro might have the answer. Possibly reactive arthritis. When my mother passed (trauma), my father suddenly became painfully disabled with arthritis. After 6 months it went away! Let’s hope!

I am disgusted at how you have been abandoned by your doctor to deal with two serious illnesses. Please find one who will care for you. Xx

Ezio100
Ezio100 in reply to Daisychain12

Thank you daisychain, I will x

Daisychain12
Daisychain12 in reply to Ezio100

Honestly it’s really bad the way you are being neglected. My hp sees me nearly every week and more if I need it. That’s extreme because I have other issues but you need a lot more guidance. It’s not fair and I feel sad for you. Stick with us xx

Everyone here has already provided some helpful information.

I would stay at 25 and not try to taper down if this dose is barely providing relief. For future tapers, don’t reduce more than 10% each drop....it is a good guideline moving forward.

Being overseen by a rheumatologist might be best given your diabetes and uncertain diagnosis. They can do further testing to rule out, or pinpoint your condition.

Losing weight is possible while in pred. I’ve followed a low carb/sugar/salt diet since May (when I was diagnosed with PMR after 5.5 months of symptoms prior), and dropped 32lbs and reduced my blood pressure medication in half.

Getting an accurate diagnosis and effective pred dose and slow taper goes a long way in managing PMR. So does avoiding stress and balancing rest and activity. Adjusting to a new lifestyle post PMR can be challenging, but utilizing your supports can help. Once my shock, anger, and desire to control this condition was processed, I could accept my situation and focus on healing.

Wishing you all the best with connecting with a medical professional who can support you and aid in the treatment/management of your health woes. Keep us up to date please. You will never be alone in this forum, stick with us!

Ezio100
Ezio100 in reply to PMRCanada

Hello and many thanks for your positivity and support. I still feel a bit stunned by the way this condition has hit me, but am also beginning to understand it a bit more now!

I realise the Pred should be respected more and will not try these big ‘cuts’ of 5mg again. I’ll definitely push for a referral to a Rhumatologist when I see my gp in a few days .

Like yourself, everyone here is kind and knowledgeable and inspiring to those new to the condition.

I’ll let you know how it goes 👍

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