My dad has been recently diagnosed with PMR - PMRGCAuk

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My dad has been recently diagnosed with PMR

Lea-D profile image
23 Replies

Hi all,

I’m hoping that someone is able to offer some advice. My dad, who is in his mid 60’s has recently been diagnosed with PMR after weeks of debilitating pain. The pain is all over but seems to be worse in his shoulders, arms and hands.

My dad also has diabetes but does not yet need insulin, the doctor has said that this may well be reversible if he takes care of his diet and makes a few lifestyle changes. He is overweight and also suffers from sleep apnea for which he uses a CPAP machine each night. He has high blood pressure for which he also takes medication.

The GP prescribes prednisone for his PMR a few weeks ago which cured his pain completely almost instantly. After around a week on the medication he has been advised to reduce the dose. He was initially on 5 or 6 tablets once a day but has now dropped down to three per day. After dropping to two a day his pain returned quite considerably so the GP put him back up to 3 daily which helped but he still had ‘manageable’ pain levels. Over the past few days since being on this dose the pain is steadily worsening but the GP seems extremely reluctant to increase the dose and is anxious to get him off the prednisone completely.

I have read that each flare up of PMR typically lasts 18-24 months so I am extremely worried that he’s going to be left in debilitating pain and unable to cope. He also seems to be suffering from a very low mood which is completely understandable given his situation but it is so unlike him as he’s usually such a happy man.

I’m so sorry for the long and rambling post and thank you so much if you have made it up to here. I’m just hoping that someone that may be in a similar situation can offer some advice or tips to improve his situation even just a little.

Has anyone else had their dose reduced at such an early stage and if so how did you cope with pain? Are there any supplements or dietary changes that may help?

Many thanks in advance

Leanne

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Lea-D
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23 Replies
PMRpro profile image
PMRproAmbassador

Bit short of time just now - but I do wish I understood why GPs are happy to diagnose PMR bit then seem unable to carry that diagnosis through to its conclusion: it is a chronic illness, like RA, and the patient needs pred as long as it is active to manage the pain. I fear 18-24 months is a fable that applies to about 1 in 3 patients - for the rest of us it lasts longer and median duration of management with pred is just under 6 years (the time for half to get off pred). 40% still need a low dose of pred at 10 years.

medpagetoday.org/rheumatolo...

This is a better approach to managing PMR:

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

It's better, not perfect.

Will be back later to add to this but others will be along shortly.

My suggestion to help your dad? Find someone who knows what they are doing! There may be someone in the practice but if not - is a private appt with a recommended rheumy an option?

Lea-D profile image
Lea-D in reply to PMRpro

Thank you so much for your reply, I will take a look at those links.

The GP has said that she is anxious to reduce his dose as quickly as possible due to the possible complications Prednisone could cause in relation to his diabetes.

I am worried to death about the possible harmful side effects that prednisone may have but am equally concerned that he will be unable to cope without them. It feels extremely cruel that he was given this miracle drug that had him feeling 10 years younger within days, only to have it snatched away again.

I was reading into the possibility of incorporating CBD oil but have found that it can interact badly with the prednisone. It’s such a frustrating situation.

Thank you so much again for your reply, it is much appreciated

PMRpro profile image
PMRproAmbassador in reply to Lea-D

She'd be better accepting that it will be a bit more complicated managing the diabetes - or she risks making him increasingly depressed and all that goes with that. I had 5 years of PMR without pred due to an incompetent GP - low mood is part of PMR symptoms but constant pain and diability makes it worse.

I have only met a couple of people who found cannabis helped - and it wasn't CBD oil, it was smoking one of the variants. And I don't think it helped the PMR - just the add-ons.

Lea-D profile image
Lea-D in reply to PMRpro

I have just re-read your reply and see that you mentioned a rheumatologist appointment. He has been put on a waiting list to see a rheumatologist but due to Covid it’s all very delayed. I am holding out hope that they will be able to do more to help him when he finally gets his appointment scheduled

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Leanne

Sorry to hear about your dad. You might like to read this so you understand what’s going on... and therefore help him.

This is from a patients viewpoint - healthunlocked.com/pmrgcauk...

PMRpro has given other links - and I agree he needs to see someone who has a better understanding of PMR and the effects it and the steroids might have on his other problems.

Please keep in touch.

Lea-D profile image
Lea-D in reply to DorsetLady

Thank you so much for your reply and advice. I am keeping my fingers tightly crossed that his rheumatology appointment will be more helpful than his treatment thus far from the gp. I know that she has all the best of intentions but like you say, he really does need the help of a specialist

SnazzyD profile image
SnazzyD

Hello, PMRPro knows her stuff and I’ll agree that the GP needs to do some reading.

The Pred dose he’s had could easily alter his mood not withstanding his recent suffering. This will settle as the dose reduces. He may even get withdrawal at this early stage.

I will also urge him to get control of his diet right now. Pred will exacerbate his diabetes and his GP is right about this one in that diet is key. With Pred, it isn’t just a case of eating sensibly, he needs to cut his carbs right down. Pred causes spikes in blood sugar because of its effects on the liver energy stores. He has to avoid making these worse by severely cutting carbohydrates such as potato, bread, rice, pasta etc. If he is on CPAP because of his extra weight he can’t afford more weight to go on. Steroids cause a mostly unavoidable shift of fat to the neck and face area so any weight gain will settle there in particular, making the apnoea worse.

Once he is on a dose of between 15-25mg of Pred for a few weeks the pain should ease. Hitting him with a highish dose and reducing fast has done him no favours so he needs to take heart that he should be better controlled than this. This shouldn’t be how it is. Another thing to cut is salt to help with fluid retention.

You may find yourself having to become an expert yourself to advocate effectively. Well done for reaching out.

Lea-D profile image
Lea-D in reply to SnazzyD

Thank you so much for taking the time to write your lengthy reply Snazzy, it is super helpful and I have passed on this information to my dad. He has promised to make the necessary dietary changes so it has taken a weight off my mind to know that he is going to work on reducing the risks associated with taking prednisone.

Fingers tightly crossed for his rheumatology appointment. I hate to see him like this and pray that they are able to offer him more support and reduce his symptoms more safely.

Warm wishes to you and thank you again

Just to say Lea-D that my late Dad (rip 28/12/19) had PMR and Diabetes too, suffered so much with his pain particularly in his shoulders and could barely lift them at times. He managed really well in the end on a tiny dose of 1mg Prednisalone so as it would not impact upon his diabetes and CKD. I so wish that I had known about this forum when my Dad was still with me as I would have been able to have supported him so much better. I was able to support him with changing his diet however which helped a good deal. And now ironically, I am being treated for the same condition... This forum is a life saver as is prednisolone. Good luck, your Dad is lucky to have you fighting his corner 🙂

Lea-D profile image
Lea-D in reply to

I’m so sorry for your loss and to hear that you are now suffering from PMR too. I see how it’s affecting my dad and feel awful for anyone who is having to suffer the same symptoms, it’s so debilitating.

I’m so pleased to hear that it can be managed more effectively through diet and lifestyle changes.. if this means he’s able to safely remain on a higher prednisone dose to more effectively manage the pain that would be wonderful as I can’t stand to see him suffer like this.

I am hoping that the rheumatologist is able to guide him to a more suitable treatment plan as nobody should have to live in constant pain.

Thank you so much for your well wishes lovely. Wishing the same to you

Rokerman profile image
Rokerman

I’d echo CF2020’ comment that your Dad is very fortunate to have you looking out for him and for joining this forum!

Advice from those such as PMRPro, DL, Sheffield Jane and others will prove invaluable - if you heed it, your Dad’s life will be better; it’s worked for me!

As to diet and diabetes - if you could have a look at my most recent post, you’ll see that this can have a really significant effect. I was rather sceptical at first and not particularly enthusiastic if I’m honest - however the results spoke for themselves.

Good luck and best wishes.

Lea-D profile image
Lea-D in reply to Rokerman

Thank you so much for your reply Rokerman ☺️ I just had a look at your most recent post and it was so encouraging. Well done to you for taking charge, losing weight and reversing your situation.

My dad loves his belly and has been quite reluctant to make any meaningful dietary changes until now. I can completely understand, with so many health worries and continual pain, the last thing that he wanted to do was restrict his diet and make himself miserable and I didn’t want to nag him given his already low mood but the advice given on this forum has already been invaluable as I’m passing on advice from others who are in his situation and I’m confident that he’s going to make the necessary changes moving forwards ☺️

Kendrew profile image
Kendrew

Hi Lea-D. I was diagnosed 18mths ago with PMR. My dad had it too....and my sister! Dad is no longer with us but managed it reasonably well for the last 8yrs of his life with correct diet, gentle exercise and maintenance dose of 1mg pred. (Was never able to taper off completely) My sister was off pred within 2years. (Very rare that's possible and she's been extremely fortunate) I was previously very healthy... gym 5days a week, didn't smoke, rarely drank and healthy diet. Never took medication unless ABSOLUTELY necessary (eg. Antibiotics) Not even paracetamol. So, having to go on pred was the worst and most scary thing possible and my aim was to get off it asap. This forum has thankfully re-educated me so I now know that my aim has to be to taper (very slowly) down to a dose that manages the symptoms, controls the inflammation and then stay at that level until things become stable and then I can consider another gradual reduction. I've made mistakes and I'm currently trying to get control of symptoms again, but believe me, the advice you'll get from here is better and more reliable than you'll receive from most of GPs and rheumatologists. I'm also on a cocktail of other meds to counteract some of side effects of pred. So much for resisting medication! Although things aren't perfect, all in all, life is pretty good and I can go out and enjoy myself with not too many restrictions....despite being on prednisolone! Steroids aren't ideal, but they're a game changer for PMR and if you respect them, you'll have a much better quality of life with PMR and also be able to minimise some of the side effects. Listen to what the experts on this site tell you and read everything they recommend because the more clued up you are, the better decisions you can make with your dad. Don't be scared for your dad.....try to be thankful that he can actually be treated...and usually quite successfully.......and although there will undoubtedly be a few hurdles to overcome along the way......this forum will be here to support you all the way. We are so fortunate to have these amazing people. I wish you and your dad all the best on this journey.

Lea-D profile image
Lea-D in reply to Kendrew

I’m so sorry to hear that you and others in your family have been so unlucky with PMR Kendrew.

I’m very much like you in regards to medication and was always much more geared toward finding natural alternatives but when my little one was born with cystic fibrosis 8 years ago I realised just how invaluable and how much of a game changer medication can be. This is why it felt so cruel that my dad was given a drug that seemingly cured him completely, only to have it taken away within a week. I assumed that there must have been a crucial reason for the GP to take this course of action so soon but was equally concerned that he was going to be left in unbearable pain.

I’m so glad that I found this forum and thank you all so much for your advice and support, it really does mean the world to me and has given me hope that there is a course of action to take and he won’t be left in constant pain. I am hoping that the rheumatologist will have a more workable treatment plan for him and meanwhile he can work on reversing the early stage diabetes ☺️

Loyd profile image
Loyd

Hi Lea - your poor Dad! Sounds like he needs a second opinion. I had a similar case. Diagnosed March 2019 and started on 15mg (3 pills) instant relief. Tapered far too fast and had a massive relapse - put up to 30mg for a short few days - again worked perfectly. Now on a very very very slow taper down to 14mg now and plan to go even slower as I get down to 10mg. Your Dad needs a dose that will take his pain away and then taper slowly. I hope he finds the help he needs.

Janicecm profile image
Janicecm

Great advice on here and I read it every day. Can I also advise you join PMRGCAuk - the charity that directly supports people with PMR and also Giant Cell Arteritis (GCA) which is another condition to be aware of. I have PMR and did not know anything about the condition and the charity was a lifeline for me. In normal times there are many local support groups to go to but now some can be accessed through Zoom. Check out the website - subscription is £15 per year and certainly money well spent!

Barnaby2 profile image
Barnaby2

sorry to hear about your Dad. I was put on Prednisolone in January and it helped considerably until GP tried reducing dosage so that by July on 9mg and all my symptoms came back. GP asked Rheumatologist for advice and he asked for me to come off Pred and take Naproxen. Since then I have got steadily worse-had two steroid injections that did not work and now in a bit of a bad state. Ask GP for a rheumatologist appointment. There may be a reason behind them trying to get him reducing quickly ie If on Steroids more dangerous to get Covid 19. I hope they can sort him out

PMRpro profile image
PMRproAmbassador in reply to Barnaby2

There is no evidence it is more dangerous to be on steroids if you get Covid - they use steroids in managing Covid.

And long term Naproxen has its own risks in gastric and cardiovascular effects - so there isn't a lot of point taking it in PMR since it almost never helps even to take the edge off the pain.

Rokerman profile image
Rokerman in reply to Barnaby2

Your situation doesn’t sound right at all?! If you showed a marked improvement initially on Pred, that surely speaks volumes.... Sounds to me as if you need to get back on an appropriate dosage of Pred and a sensible tapering plan? (but you might need a new GP & Rheumy..?)

Kendrew profile image
Kendrew

Just one final thing. I've found it really helpful to take some advice from the experts on here prior to a rheumatologist appointment so I have some idea of what sort of questions I should maybe asking and what responses and decisions I should maybe question before just accepting them.....particularly if I'm confused or unsure. Good luck.

ChinaWuntoo profile image
ChinaWuntoo in reply to Kendrew

Completely agree. It also helps you to decide whether the rheumatologist knows what he/she is talking about. Many don't as I can testify and I had a senior rheumatologist in a London teaching hospital.

I have found that the advice on this site has enabled me to take control, sack my rheumatologist (though he's not gone yet!) and educate my GP with agreement about treatment plan. We are all different but the experts here know this and know what they are talking about.

Gunflash profile image
Gunflash

Hi Leanne,

I am very similar to your Dad, however I am 77. I was diagnosed with Pre Diabetes back in late January and with PMR in March. Much the same symptoms, pains all over and could not bend down to pick up a golf ball from the grass. I was started on the recommended dose of 15mg some 7 months ago and I am now down to 4.5mg and now tapering at 1/2 an mg every 4 weeks. I get the odd bad day with cramps in the legs and the odd pain in the shoulder but otherwise I am fine and playing golf and walking. I have been up and down a bit in dosage, especially in the early stages when I did not know much about the condition, but much more stable now. My weight has reduced from 198lbs back in March to a stable 170lbs now. that took almost 6 months on a low carb diet, the reduction was slow, loosing around a pound a week, the benefits of which have been enormous. I am now out of the prediabetes range and signed off. So this can be done, it takes some willpower, and dedication but the results can be so very rewarding.

What the PMR holds for me in the future is anybody's guess, this very excellent site and those who advise us on it, has been a godsend to me and I have such respect for all of the experts we have on this site who help us with PMR and related conditions. I am so very wary of pred dosage and can testify to the downside of trying to reduce too early through lack of knowledge. If there is one golden rule I have learned from PMRpro, Dorset Lady and the other knowledgeable individuals who offer advice on this site, that is not to reduce too quickly but to follow the accepted standard reduction for PMR with Pred.

Like me, you were in a fog with no idea which direction you should take, well your Dad, through you, is now in the group and the fog is cleared, welcome and the best of luck.

PMR/GCAuk......I joined, such a small price to pay to keep this excellent and informative site continuing. Very best wishes, Gunflash

Whitner profile image
Whitner

Lea-D your father is so fortunate to have a daughter like you! I agree with all the information you’ve received from this excellent forum: find a good rheumatologist, watch your dad’s diet, be on a high enough dose of prednisone to get symptoms well in hand and then start a slow taper of prednisone while keeping PMR symptoms under control never reducing more than 10 percent each month. We who suffer from PMR are so fortunate to have a drug that allows us to live a pain free life!

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