Sad and in pain: I feel so sad and depressed. As I... - PMRGCAuk

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Sad and in pain

LMali profile image
99 Replies

I feel so sad and depressed. As I type this, it is causing such pain in my left arm, brings tears to my eyes - sadness or actual pain? When diagnosed with PMR in July 2020 I was convinced I would be textbook, reduce to zero pred and disease burn out in 2 years. I tapered to 3.5 in September 2021 and had a flare so increased to 5 and tapered again - VERY slowly. Got down to 3.5 at start October 2022. All okay for a couple of weeks. Then I started getting pain in my left arm and basically it has not gone away. I have a lesser pain in right arm. At first I was determined to stay on 3.5 but yesterday I gave in and increased to 5 mg. Hoping for instant salvation. This morning I woke at 5 am with the same pains and consequently feeling tearful. If 5 mg IS enough to control PMR, would it be so awful to stay on that for ages, and not taper? I have had diarhoea for weeks (probably not connected but having tests) and my whole body just feels worn out. I remember when I started Pred - 15 mg - and the instant amazing effect it had on me. I just wish I could take that again, forever! I did wonder if HRT would help with general feeling better and discussed with GP. I suppose my question is a bit philosophical - what is more important, regaining quality of life on higher pred dose or reducing pred and finding life a daily, depressing struggle?

99 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

hi,

Sorry you are feeling so down, but some of it could be adrenals not functioning correctly, which is quite common, see this link -

healthunlocked.com/pmrgcauk...

..but obviously not helped by you expecting to be back to normal within 2 years….and reducing too quickly.

However I do think you probably need to treat flare as described in this link -

healthunlocked.com/pmrgcauk...

Maybe going up to 8 or 9mg to get things really under control, then down in 2 steps to 4mg - stay there as long as you feel you need to - you will get to zero - but in time…and if you accept it will take as long as it takes it will be easier on you.

But QOL is very important - and hopefully you can achieve that on a dose that is low enough to cause no side effects.

LMali profile image
LMali in reply to DorsetLady

Hi DL, thank you for those links. The adrenal one was particularly interesting as I have most of the symptoms (including lightheadedness when I work bending over (gardening) and breathlessness (when I stand up again). Also I see diarhoea can be symptom of adrenal issues. And also muscle / joint pain and fatigue. The pain in my arm is really bad - so it is the most obvious symptom, but all my limbs ache to a greater or lesser degree. I used your 7 week tapering plan to get to 3.5 so I have now followed your advice and just gone up to 8 mg! I am desperately hoping that I will wake up tomorrow for a reason other than arm pain. I have spoken to GP (who is quite nice) about diarhoea, PMR, HRT, etc, but not specifically about adrenals so I shall when I check back in with him. Thank you for your help x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to LMali

yes I thought adrenals..they have a lot to answer for! Hope the 8mg helps , but give it a few days -fingers crossed

Lollybygolly profile image
Lollybygolly

hi I wrote a reply but it got lost! My fault. The gist is that sometimes there’s more than one thing going on and diarrhoea isn’t a trivial matter when it’s regular: have you asked your doc to check this out? I ignored mine for ages and only when I started taking a high quality probiotic did it resolve - it reappears when I have bread unless frozen then toasted. The Pred problem seems to cause so much anguish but you have to have a life and if a slightly higher dose works. Well it does for me, but I’m 70 next time do I want quality over quantity. I’m on 10mgs a day and it’s worked for me for the last year or two. Sending hugs and many many blessings.

LMali profile image
LMali in reply to Lollybygolly

Thank you! Yes, I discussed diarhoea as I have had it for a few weeks now. He has sent off four different stool tests. 2 have already come back clear and awaiting the other two. Sounds silly but I almost want it to be something because if they are clear too, then you are just left asking why you have diarhoea and feel generally rubbish?!

Lollybygolly profile image
Lollybygolly in reply to LMali

I know! It’s a relief when you know the name of your enemy so you can see it off! Honestly a good diary, de-stressing and getting plenty of sleep will help but also probiotics vitamin D3 and K2 should help ward off infections. Take care

agingfeminist profile image
agingfeminist in reply to LMali

You are going through a really tough time. I think the worst part of this disease is coming to terms with how this disease transforms some us from fit and healthy individuals into physical wrecks. I feel like I have aged 10-20 years.

I notice you mention gardening...maybe you are doing too much at the moment...could that explain the arm pain? The fact that the pain is not bilateral might mean you have overtaxed that muscle. Does paracetamol help (it won't if it is PMR)?

I have just vacuumed my bedroom...it will take hours to recover and I won't do anything physical for a couple of days.

Epsom salts in a bath sometimes help muscle pain (some people take magnesium supplements but they can cause diarrhea! )

I do hope the tests come back all clear......If they do, then try loperamide (sometimes called 'stop it'). You can buy it over the counter (follow the instructions...starting with 2 tabs). It can stop the diarrhea and give your gut bacteria a chance to reestablish.

Just to remind you to drink plenty...perhaps an infusion of ginger in hot water. And eat gentle foods...rice, apple sauce...baby foods...this is a horrible time for you but it will pass. Most of the time it is impossible to see a light at the end of the PMR tunnel, but people on here have got there...we will too!

LMali profile image
LMali in reply to agingfeminist

Thank you so much for your kind words. This forum is amazing. I was so sad yesterday, but today I feel so much more positive. The pain is still there but the change to my mood is down to the conversations and support I have received through this website. I am trying to drink lots of water, but then I'm up all night weeing !!

agingfeminist profile image
agingfeminist in reply to LMali

You only need to drink enough to get pale urine...don't overdo it...and perhaps don't drink in the evening. So pleased you feel better today...reading the posts on here do make me feel that I will get through this eventually ....

PMRpro profile image
PMRproAmbassador in reply to LMali

I read an interesting medical article recently about a study showing the recommendations to drink so much (2 litres and more) are wrong. The fluid intake they suggest does not take into consideration the fluid obtained from food - lots of water in salads, fruit and veg, soup and sauces/gravy too.

BrunswickV8 profile image
BrunswickV8 in reply to PMRpro

And beer! Don't forget beer! I drink beer TOO forget!😂

PMRpro profile image
PMRproAmbassador in reply to BrunswickV8

Yes - the "tea doesn't count" thing drives me up the wall! It is fluid. Yes, there is a diuretic effect but all it does is speed things up, you don't lose MORE water. Even water has a diuretic effect if you drink too much!!

Gossiplady profile image
Gossiplady in reply to agingfeminist

hi agingfeminist! Sound advice and comfort in your reply. Lovely! Made me feel good. Thank you.

Bling123 profile image
Bling123 in reply to LMali

Hi , I had diarrhoea for 7 month after I had covid and before Prednisolone , had a colonoscopy and came back ok. Dr put it down as IBS no treatment it has settled but I think it is part of PMR .I can have it now and again still , I also have long covid which I think is where my PMR developed from .

Karendeena profile image
Karendeena in reply to LMali

Hi there, I'm afraid I suffered exactly the same as you. Initially I piled weight on and was constantly on a high with a massive appetite...then I was tapered too fast and went the opposite way, lost a lot of weight, lost my appetite and had nausea. Was convinced I had some kind of cancer (yes, I developed health anxiety too). I put myself through all sorts of tests including CT colonoscopy and guess what,? Nothing, it was down to the extra fast taper. Put back on 5mg with very slow taper and although my disease relapsed when aI got down to 1mg my digestive tract improved. I can't say I am the same as I was before prednisolone but I am hoping one day I will say goodbye to the devil's tic tacs, only this time I'm in no hurry. Diagnosed in May 2021

BrunswickV8 profile image
BrunswickV8 in reply to Karendeena

"The Devils Tic Tacs". Brilliant!😂 Thanks.

Karendeena profile image
Karendeena in reply to BrunswickV8

I know, love it, I have a packet of them by my side at all times 😂😂😂

Appledore6 profile image
Appledore6

Hi sorry you are having such a dreadful time of it. I think most of us have been where you are in 1 way or another. I have always really struggled to reduce my Prednisolone over the past 5-6 years. When over 10mg have had worrying side affects. I do not really have a G.P. or M.D. as I think Americans call them so had to look to myself and the internet not ideal but I had no option. The aches in my shoulders 1arm neck pelvis especially left hip and thigh were horrendous. In brief started taking high dose vitamin D and K2 and Magnesium. Total change of diet fresh food only meat fish dairy veg and salad a few berries and nuts. Spices and herbs. No carbs apart from few potatoes. The biggest help with pain was when I stopped all wheat. I have never had a food intolerance in my life. I have no explanation but there you are. I have been able to very easily reduce prednisolone from 12mg to 5 mg in last 6 months with no pain no ache at all no side affect. We are all different but keep your chin up. The most important thing I learnt from this site when I first joined was how important looking after yourself is getting enough rest sleep reducing stress in all areas. It is surprising how difficult that is to do. I am now an expert in having a lazy day if I am feeling overly tired it really does help. Hope you find your way. Take care x

LMali profile image
LMali in reply to Appledore6

Thank you so much for your support and advice. When I was first diagnosed, I changed my diet to the anti-inflammatory diet, determined that as I phased off Pred, my body would be prepared to deal with inflammation on its own. I did lose some weight (good, I needed to anyway) and felt good but then I was on a high dose of Pred which I think took 20 years off me! As the dose reduces I feel my age and some! I watch my mum who is 77 and she seems fitter than me. The wheat point is a good one. I do have my suspicions about the effect of bread, even wholemeal. I do love it so though 😔

Appledore6 profile image
Appledore6 in reply to LMali

Yes wheat/bread was very difficult for me as well. To make it worse sorry to spoil your day but gluten free alternatives which I ate for several months are a problem for reducing steroids as well for me. Only cutting all out helped enormously. I am sure many are fine with it but I was so desperate to feel better I will try near anything. On the plus side you do get used to it in a month or two.

Joseph14612 profile image
Joseph14612 in reply to LMali

I made some gluten free bread from ground psyllium husk powder and Almond flour....not the same but not too bad...

here is the link ....dietdoctor.com/recipes/the-...

Lollybygolly profile image
Lollybygolly in reply to Appledore6

haha just read yours after a lecture from my friend this morning about taking k2 with my D3 made me sit up. That’s two people today who have reminded me so it’s off to Holland & Barrett for me. Cheers.

Appledore6 profile image
Appledore6 in reply to Lollybygolly

I do not think Holland and Barrett will sell the high strength vitamin D and K2 that you need. I take 5000iu every other day and will do until end of March in the U.K. Prednisolone depletes us of vit D I have twice had blood tests and my levels have been alarmingly low. I am fortunate to have a garden and am out every day when weather is fair. Good Luck

Lollybygolly profile image
Lollybygolly in reply to Appledore6

the fresh air and sunshine is perfect for keeping the spirits high - the best medicine of all

PMRpro profile image
PMRproAmbassador in reply to Appledore6

H&B sell 3000 and 4000 IU tablets

PMRpro profile image
PMRproAmbassador in reply to Appledore6

I developed a wheat intolerance about the same time the PMR symptoms appeared. It wasn't gluten, rye and barley were fine. The local coeliac expert said he thought it was "leaky gut syndrome" - years ahead of his colleagues who were sceptical of the concept.

It is only larger amounts of modern commercial wheat - I can eat spelt and kamut. At higher doses of pred I could small amounts and am now on Actemra which also seems to deal with the intolerance problem.

Appledore6 profile image
Appledore6 in reply to PMRpro

Thats interesting I suspect very similar with myself. I have also noticed many people on this site say that they have developed problems with left hip as well never the right to same degree. Is it P.M.R. or the steroids? I cannot believe in so many coincidences. Thank you for all your time you generously give to people on this site. P.M.R. is truly a ruddy awful condition to live with.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Appledore6

"P.M.R. is truly a ruddy awful condition to live with.".

.. there are a heck of a lot worse....GCA being one...and that's not as bad as many.

Appledore6 profile image
Appledore6 in reply to DorsetLady

You are so right Dorset Lady I shudder and count my blessings when I read about GCA.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Appledore6

My late hubby had coronary issues for 18 years (impacted life a bit but not too much) and then terminal liver cancer (he would say partly self inflicted)... so I think my GCA was easy compared to that..

...all depends where your starting point is I guess..and what QOL your illness allows.

Smithie49 profile image
Smithie49 in reply to Appledore6

I add my sympathy to the others here. It sounds like you're having a really tough time. Very best wishes. I am very interested in reading about people having left hip trouble as mine is bugging me!!! Why specifically the left hip? Before being diagnosed with PMR 5 months ago I pulled a hamstring in my left buttock so have put the weird tightness and slight pain there down to that but the whole of my left hip is uncomfortable. Interesting. By the way, now on 6mg pred but it is only just holding the stiffness at bay.

Abbeynan82 profile image
Abbeynan82 in reply to Smithie49

I’m having serious pain in left hip-seems alternately t be sciatica and trochanter, also wide hip pain and lower spine or back pain. I have been on Prednisolone for 3 years 30 mg down to7. Couple of flares. Now flare uncontrolled at14 mg. Almost impossible to walk. What would any of you think of this? Back up to 20 mg after 3 years?? Disconsolate and fighting with Practice this morning in tears. Get fobbed off to part time lady doctors who don’t understand this stuff.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Abbeynan82

Think I would asking about osteoarthritis and requesting a hip X-ray. Have you tried ordinary painkillers -just in case they make any difference?

Not good enough service from your surgery…

Seekingasolution profile image
Seekingasolution in reply to Abbeynan82

I have just listened to 2 short researched articles ( video) on nutrition facts.org - one for frightened friend who has just been diagnosed with Sjögren’s . I learnt that salt can trigger a variety of AI conditions and increase inflammation ( so that’s me now increasing herbs, chilli and garlic !) and also that sciatica is linked to cholesterol . Might be worth considering. I’m trying to get my cholesterol down too.

PMRpro profile image
PMRproAmbassador in reply to Seekingasolution

Dr Greger of that website, together with Eric Berg, are regarded by other members of the nutrition world as being a quacks who disseminate misinformation;

humanewatch.org/hsus_doc_ex...

gives a potted version of an expose of his claims though the full article is worth a read

sciencebasedmedicine.org/de...

This is the originator of the salt claim:

medicine.yale.edu/news/medi...

But the salt claim is particularly interesting - since another study found that a high salt diet PROTECTS again demyelinisation in MS. In mice. So how would he fit that one in? It is normal to find contradicting studies in the science world - so it would be interesting to find which have been confirmed by another group. The salt intake is directed at the US diet which includes very high levels of processed and ultraprocessed foods.

More often than not these possibly dodgy sites can be identified by what they are promoting and what they are selling you. They cherry-pick publications that fit their concept and very rarely even mention anything that doesn't.

Yes, using alternatives to salt may be good for you, makes food a lot more interesting - but I doubt it will cure your PMR! The only salt I use is the amount in the herb mix I use for salads and roast vegetables and I eat almost no processed food, cooking from scratch. The only difference I notice is that if I eat out or salted foods like sauerkraut a few times is that my ankles swell!

Seekingasolution profile image
Seekingasolution in reply to PMRpro

well he’s certainly not the only one promoting vegan diets as potentially helpful for AI disease

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

I would have thought Yale medical school were not ‘snake oil salesmen ‘ - the link you also gave

medicine.yale.edu/news/medi...

PMRpro profile image
PMRproAmbassador in reply to Seekingasolution

Wasn't talking about the promotion of a vegan diet - I was talking about the quality of his reasoning and "evidence" which is seriously dodgy. The Yale paper was about salt. My granddaughter used to regularly end up in the ED circling the drain with brittle asthma - since going vegan she has "normal" asthma. Her mother no longer has acne and other skin problems since going vegan. A study in RA patients, albeit very small, found a strict vegan diet reduced joint pain in half of patients - but reintroducing even the tiniest amount of animal protein stopped the effect.

There is nothing wrong with a healthy vegan diet - but many vegan products come in the ultra-processed bracket and are not good for general health. Many of them are based on wheat - also sometimes a problematic substance.

PMRpro profile image
PMRproAmbassador in reply to Abbeynan82

Since you complain of sciatica and trochanteric bursitis - that adds up to greater trochanteric pain syndrome which really can cause a lot of low back pain and problems when there is a lot of myofascial pain involvement. I had a big PMR flare back in the early spring and my flares are always heralded by major low back problems. Physio has helped a lot but I'm still struggling a bit with pain - instead of being severe and short lived it is just grumbling away all the time whatever I do although ordinary pain killers make a notable difference. Even the physio exercises I know I need to do leave me in a lot of discomfort that I can't get sorted out - except by sitting still which doesn't hurt!!

But your GP practice is dragging its feet - and x-ray to rule out come things and a physio assessment is required. f2f physio and hands on involved, not a telephone conversation and a bit of paper ...

LMali profile image
LMali in reply to Abbeynan82

Gosh, I feel for you. I would have thought at 14 mg you should be fine. You poor thing. I hope you find a solution xx

Purple-Owl profile image
Purple-Owl in reply to Smithie49

I too have left hip pain.

Smithie49 profile image
Smithie49 in reply to Purple-Owl

Weird isn't it?

nickmits profile image
nickmits in reply to Appledore6

HI can you tell be more about cutting out wheat.. I'm struggling with the PMR and the prednisone I'm down to 2 mg hasn't helped over the years much and muscle pain is agonizing in the morning and reduces a bit during the day ,but I've had it for two years now and I eat very healthy overall ,but I still have wheat when I have beer etc. and some bread here and there ...I am perfect weight and no other conditions , 61 years old ...so I think I'm healthy but I tried cutting out some of the stuff for maybe a month I didn't do anything ...so can you expand a bit more on the wheat connection and how strong you feel about the effect of wheat with this condition.... I did have a food intolerance test and I did say those foods were not good for me... but I don't know if those things are for real.. I need to be convinced that this is going to help. I've tried supplements and many other healthy lifestyle choices-- but never cut out the gluten to any major degree. THanks in advance..NICK

LMali profile image
LMali in reply to nickmits

You sound like me, in which case, the consensus seems to be you need more pred! That pain in the morning that fades (but never vanishes) is PMR. If you have it all the time, you are not taking enough Pred.

PMRpro profile image
PMRproAmbassador in reply to nickmits

It will be an individual things - I wasn't eating wheat when my PMR finally set in properly and there are coeliacs on the forum - still developed/have PMR!

nickmits profile image
nickmits in reply to PMRpro

Thanks..well theres some evidence for yah...makes sense.

nickmits profile image
nickmits in reply to PMRpro

Thanks....its tough- cause Ive been on for 2 years and Pred never really worked- so they Drs think it could be other forms of arthritis-- getting an MRI for Ankylosing Spondylitis next week.

nickmits profile image
nickmits in reply to PMRpro

What do you know aboutAnkylosing Spondylitis. I've gone down another rabbit hole with a second rheumatologists that is the top guy for this in Toronto Dr. Nigel Haroon if you want to check him out .After our first visit he felt I should go get an MRI of my spine ...if I check the symptoms for this type of arthritis it seems very close to what I'm dealing with ....so December 6 I'm getting this MRI and maybe I'll have an exact diagnosis ....what do you know about Ankylosing Spondylitis? Thanks alot!!

PMRpro profile image
PMRproAmbassador in reply to nickmits

I know a few people who have been diagnosed with PMR when it was really late onset ankylosing spondylitis. One feature is that the pain is seen earlier in the night than you would expect PMR pain to manifest. Of course, if the pred isn't managing the pain well because the doctor won't use enough or the antiinflammatory effect of pred isn't lasting the full 24 hours this can cloud the view. But in anyone where 25mg pred doesn't achieve a good result or reduction is very difficult, further investigations should be carried out. AS can even mimic GCA by interfering with blood flow in the neck arteries and even top experts in GCA can be misled. Part of the problem with not getting the diagnosis is that many doctor envisage a younger male patient but it is becoming obvious there is another group of patients where the onset is much later and can be very polymyalgic in appearance.

versusarthritis.org/about-a...

Lots of articles if you google it

nickmits profile image
nickmits in reply to PMRpro

Wow thanks for your help- you are amazing at helping us all and I'm so grateful to have you on my side..that link you sent me was the most comprehensive I've ever seen. Thanks again!!Nick

tonythecatx profile image
tonythecatx in reply to nickmits

Hi Nick, What did your MRI results show? Tony

MrsNails profile image
MrsNails

Oh for that amazing feeling when you first take 15mg Pred - it doesn’t last long does it!

With the pain being in one arm more than the other have you tried a simple pain killer in case it’s not connected to PMR?

The 2year is a myth & for some of us it hangs around far too long!

I do hope you get some answers & some relief soon 🙏🏼

PMRpro profile image
PMRproAmbassador in reply to MrsNails

Yes - was debating what textbook it might have been!!! Obviously one that belongs in the historical archives not on the current lending shelves!!!!

MrsNails profile image
MrsNails in reply to PMRpro

From the last century perhaps 🤔 😉

LMali profile image
LMali in reply to MrsNails

I took paracetamol for a while but didn't seem to make any difference. Dr has given me something stronger than para but not codeine. I am reluctant to take it for some reason. I think it is because I feel reasonably sure it is PMR so was hoping it would just fade. If it won't then I know I need Pred - and following this morning's exchange, I have made the decision to go back up to 8 mg. My arm still hurts the same but I feel relieved!

PMRpro profile image
PMRproAmbassador in reply to LMali

There are a very very few people who find that NSAIDs such as ibuprofen help PMR pain - they really are the exception. Paracetamol does even less - not enough anti-inflammatory effect. If your pain is helped by any painkillers - including opioid derived drugs - then whatever the pain is, it is unlikely to be due to PMR. They will help with some of the add-ons though.

MrsNails profile image
MrsNails in reply to LMali

It’s always worth a go but you just know don’t you when it’s PMR - hope the extra Pred helps 🙏🏼

LMali profile image
LMali in reply to MrsNails

Yeah - 15 grams was great! I started doing a Figure 8 Fitness DVD every single day! After work!! Gosh, I don't feel I could even turn the DVD player on now 😂

MrsNails profile image
MrsNails in reply to LMali

Yes it is an amazing feeling!

PMRpro profile image
PMRproAmbassador in reply to LMali

At what dose did that feeling start to change?

LMali profile image
LMali in reply to PMRpro

Around 7 mg. I started doing a low impact workout instead but that dwindled out around 5 mg. However I did increase regular swimming instead. I now do no deliberate exercise but walk quite a bit as part of work on a smallholding. But when I was doing the workouts, it was as well as the regular walking around and working on the smallholding!!!

LMali profile image
LMali in reply to PMRpro

I see where you are going with this! So my decision this morning to increase to 8 mg could yield a happy result?

PMRpro profile image
PMRproAmbassador in reply to LMali

It might if that is enough to clear out the accumulated inflammation. We usually suggest adding 5mg to the dose at which the symptoms started to return for a week to 10 days and then drop back to the dose above where the problems started.

The idea is to find the lowest effective dose - the lowest dose that gives the same result as the starting dose did. You should never feel worse at the end f a taper step than you did at the start.

cycli profile image
cycli

there is a paracetamol with a small dose of codeine in it that is available from the pharmacist without prescription, but should not be taken for more than 3 days in a row.

Nextoneplease profile image
Nextoneplease in reply to cycli

Good shout cycli 😊 I’ve been taking these on an occasional basis for perhaps forty years! Sometimes nothing else will hit the spot…..

LMali profile image
LMali in reply to cycli

I have some extra strong paracetamol plus something from GP and also a stash of codeine from an earlier complaint, not to mention a small stash of amatryptiline which I never dared take! Oh, and Tramadol! Codeine is the best for normal pain but I think as others have mentioned, they don't really work for PMR pains (or neurological pain which is why I have so many painkillers from a neck problem I had, unrelated to PMR - just bad luck!!)

Nextoneplease profile image
Nextoneplease in reply to LMali

I also have codeine from when I had a knee replacement. I agree it doesn’t touch PMR pain, but for some other pains (mainly arthritis in my case) I find it very helpful. Just have to take care not to take too often….

stillsdisease profile image
stillsdisease in reply to cycli

I take these regularly but sparingly, like a treat when I’ve had enough pain that day.

BabyRuby1 profile image
BabyRuby1

it’s not a race to taper! Listen to your body. I was in a rush to and relapsed. Went down slower and didn’t taper till my body told me now on 2.5 for two months. Barely pain now maybe I’ll taper to 2 mg next week. Stay on the dose you are pain free with! If it takes two or three months or longer then that’s how it is. Don’t suffer by trying too fast!

Sl0th profile image
Sl0th

HiI have similar in that I am now on 3mg pred, with pain in my left upper arm and shoulder that feels just like the day after a vaccination. Supposed to be dropping to 2.5mg any day now but hesitant. I have the rheumatologist with the 'it isn't PMR you are too young and pain in wrist and toes isn't PMR' ideology. He wants me to reduce pred as low as possible, though only a month at a time so he can start again with diagnosis and treatment. OK for him, but not much fun for me! I have tried reducing sugar in diet but when you feel sore it's coffee and a biscuit for comfort. Might try again with a bit less bread and sugar but it's hard if there isn't an immediate improvement.

LMali profile image
LMali in reply to Sl0th

I have happily followed the advice of this wonderful community and gone back up to 8 mg. Diet is important and no doubt helps a bit but my experience is that it didn't "cure" the PMR. Only pred has made a difference for me.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to LMali

Diet doesn’t “cure” PMR - nothing does, but some adjustment in diet may help.

Cutting out/down refined carbs can help with the weight issue -if you have one; and there are certain foods which are best left alone if you have any inflammatory disease- but it’s very often an individual choice and like many things in life and our illnesses “one size doesn’t fit all”

LWNE profile image
LWNE in reply to LMali

Hello, you mention HRT in your original post - may be worth thinking a bit more about this? Its not for everyone but for me it was a true game changer, and I sometimes wonder if my PMR journey would have been more difficult without it. As it is, I have maintained my full range of activities throughout - though I accept that being able to retire last year was also a bonus! Good luck, really hope you feel better soon

LMali profile image
LMali in reply to LWNE

He's prescribed me some Tibolone which is not "real" HRT but reduces the risk of fractures so is additional bone protection (in addition to Alendronic Acid and Calci-D). I was hoping for HRT which would replace all my oestrogen and testosterone and make me feel 25! Or even 35!!

Ozziedays profile image
Ozziedays

Sorry to read this, would it be worth seeing your doctor or having a phone call if face to face isn’t possible? The reason I suggest this is that I started to experience some neck / shoulder ache when I was on around 4-5mg. X-rays showed that I had developed degenerative disc disease for which I had physio and ongoing advice regarding looking after my neck.

LMali profile image
LMali in reply to Ozziedays

I did have a long conversation with Dr and pretty sure it's PMR. In the summer I had a bulging neck disc which caused horrendous pain in my arms but it lasted 6 weeks and was treated with painkillers and physio. Hopefully the increased pred will work out.

Ridge profile image
Ridge

I think you answered your own question by asking it!! I got myself into such trouble before joining this site and racing to come off Prednisolone. Flare or ai? That is the question!! These wonderful people will help you and the only advice I have is like a sailor in a storm ‘steady at the tiller’

stillsdisease profile image
stillsdisease

🌻hope you feel less sad today

Flutterbies57 profile image
Flutterbies57

Thinking of u LMali . I understand what you are going through and I do hope tomorrow will be a much better day . It is like life on a roller coaster , ups and downs . Treat and pamper yourself today 😘

Tiggy70 profile image
Tiggy70

Hi LMali, sorry to hear you are going through a rough patch.. We are very much in the same time frame with our PMR. I was diagnosed in August 2020 and despite 2 attempts I haven’t managed to get below 8.5 mg Pred yet without flaring. Just when I think things are going in the right direction something comes along to knock me off my perch (I’ve just had two shoulder surgeries in 10 weeks). I’ve adopted the mind set of it will be done with me when it’s ready and that’s helping me cope better. As my mum used to say to me ‘this too shall pass’. Sending you a virtual hug, Tiggy70🌸

LMali profile image
LMali in reply to Tiggy70

Thank you! That made me chuckle. I often say to people "All things come to pass" partly because it is true but also because I imagine it is slightly annoying and unhelpful at the time (insight into my sense of humour . . . ) But it is true!!! Normally for the better . . .

Tiggy70 profile image
Tiggy70 in reply to LMali

Hi, what I was really try to convey to you was that all things will eventually come to an end and fingers crossed we can move on to better things. ‘This too shall pass’ ie it won’t last forever. 🌸

Harrywogan profile image
Harrywogan

Hi LMali, know how you feeling last week I felt the same very down and having a flare after covid and flu and 2 weeks later first shingles vaccine and then fell and broke collarbone so I've been very low ,just all 2 much could have went to bed and hibernated like the bears for winter but my lovely husband was having none of that, took me out most days for coffees or lunch and he showered and helped me dress washed my hair and helped to dry it ,still in pain don't know what shoulder the sorest the one I've got sling on or my left because iam over using it, hoping thing improved for you, take CARE HARRY.

giraffegal profile image
giraffegal

Low thyroid is a trigger for carpel tunnel and it’s not uncommon for us PMR folks to have more than one auto immune disease going on.

My arm pain resolved when I got a new Endocrinologist.to add T3 to my T4 med. The pain radiated from my shoulder to my wrist and was often mistaken for a cardiac event as it was usually my left arm and the pain drove my BP sky high. No wonder you’re teary.

Secondary adrenal insufficiency is more common than we realize and can cause muscle weakness and hip, leg, arm and back pain along with malaise, fatigue, lethargy, dizziness, exhaustion, depression, craving for salt and loss of appetite and increase in thirst.

I am going through this right now. Currently on 8 mg medrol so it can happen at higher doses as well. It seems to be a jukebox of horrors. Trying to keep my 77 ratherfuzzy chin up. Do ask for a full thyroid panel.

LMali profile image
LMali in reply to giraffegal

Thank you! 2 questions: What is a "full thyroid panel" and what do you mean by add"T3 to your T4 med?

giraffegal profile image
giraffegal in reply to LMali

It’s always a good idea to have a full thyroid panel run when one has an auto immune disease. This would include a TSH, FT3 and FT4 and quite possibly other blood tests. You can request this from your primary doctor. Thyroid medication is prescribed as T4 and T3. While many do well on T4 medications by themselves, some of us need additional T3.

LMali profile image
LMali in reply to giraffegal

I'm afraid I still have no idea what you are talking about! Never mind! I am sure GP will recommend if required!

I don't understand the term "full thyroid panel", I don't understand any of your other abbreviations!!

Seekingasolution profile image
Seekingasolution

I think we’ve all been there on the misery front. You can try counting your blessings but this disease can really get you down. I was really trying to get my pred tapered but after talking ( through tears !) to GP she put the dose back up ! The aim is to keep you comfortable she said 👍. I’m reading all I can about getting inflammation levels down. Just listened to an article ( mentioned it below too ) on the impact of salt on triggering AI conditions and symptoms. I’ve felt heaps better since I went nearly vegan ( plus B12 ). I had dry eyes but that cleared after about 5 days of only plant based diet. I’m now eating some animal products like milk and a bit of cheese but keeping the balance towards plant based food. It’s working for me so I hope it might for you too. It seems to me that what we eat is so often linked to what makes us ill.

PMRpro profile image
PMRproAmbassador in reply to Seekingasolution

As I explained on your other reply with this link - the originator of the article is regarded by other members of the nutrition community as someone who cherry-picks his studies to fit his claims and who spreads misinformation. His videos should perhaps be taken with the proverbial pinch of salt.

Seekingasolution profile image
Seekingasolution in reply to PMRpro

I always respect your knowledge which is far superior to mine and of course opinions differ in medical circles too. I just think all medical people should advise on dietary issues for different conditions and not just assume that we should know from our own research. Re the salt issue, I’ve read before that too much salt isn’t good but I thought that was related to blood pressure and other vascular issues. His video is not based on his own research but independent studies. I don’t think the medical profession yet fully understands why so many of us are suffering with AI conditions. The advice is mainly on treatment with steroids not causes but I firmly believe that what we eat and drink plays a part. In any case my own condition has improved dramatically since getting a better balance between plant and animal food - something I do believe the medical profession is beginning to endorse. I shall cut back on salt and see what happens. Got to be worth a try right ? What’s the downside ?

PMRpro profile image
PMRproAmbassador in reply to Seekingasolution

I agree - but you do need to check the credentials of the sources!

moonieboy9358 profile image
moonieboy9358

Regarding the diarrhea. When I was tapering too fast; I had horrible diarrhea. I could only taper a half to a quarter mg of steroids. The further I was along in my journey. I realized that no too people are alike. This condition is difficult to deal with even on a better day. Steroids are a double edged sword. Yes they decrease the inflammation. But, they also have side effects attached. I was not.through with my treatment plan with steroids and had to taper due to compression fractures. I still have joint pain. Part of you being discouraged could be the steroids and your current situation. I have to push to get through the day.

PMRCanada profile image
PMRCanada

Our PMR journey can be such a roller coaster, can’t it! Starting with pain and stiffness while we try and figure out what’s going on. Then with diagnosis comes pred which (usually) results in much-needed symptom relief. I’m not sure how many of us are told about the trials and tribulations of tapering and getting off of it altogether??

You’ve done well to get down to 4 successfully, twice. If you can manage to get there again, staying there for awhile is not so harmful as it is such a low dose. Many members have shared that the most difficult and time-consuming part of their tapering was 5mg and lower often due to pred withdrawal and adrenal insufficiency.

Our mindset, expectations, and level of disease acceptance also greatly impact our experience. Chronic pain/stiffness will certainly affect our mood. Your tears are justified if you are experiencing ongoing pain while being in adrenal insufficient territory. Once the pain/inflammation is addressed your emotions can follow. Hope you get your other symptom addressed as well.

Quality of life is KEY for me, especially as I’m currently dealing with dying, death and grief regarding loved ones.

LWNE profile image
LWNE

Well ....Tibolone is what I take! And it works - for me and my sister in any case- just like "normal" HRT .....whilst giving some bone protection, a bonus. Most GPs dont want to prescribe it because its more costly, my sister paid privately, and I persuaded one of the GPs to let me try it - and 6 years later I still feel really good on it. I tried the cheap standard HRT at the beginning and it did not suit me at all, so I was very pleased to get the Tibolone. Obviously it all depends on individual circs and medical background, but I hope my positive experience may be helpful to you! HRT made my life bearable again, and although I know there are some risks, for me, the benefits definitely outweigh these. Happy to provide any more info if helpful!

LMali profile image
LMali in reply to LWNE

Ooh! That sounds hopeful then! Thank you!!

Brocade profile image
Brocade

Hi, You really hit a nerve with me as my pain became utterly unbearable yesterday for the second time in 2 weeks. I have PRM with Milwaukee Shoulder (no GCA fortunately). I was diagnosed in the Spring 2020 (can't remember starting dose of Prednisolone but around 15 mg + I think) and think the PMR symptoms had probably been lurking around for some time before that. Was on that for quite a while and then started a lengthy and slow reduction. When I got about 7 mg pain refused to go away. I have no adrenal glands and was already taking Hydrocortisone which of course got changed to Prednisolone. I couldn't get hold of the consultant so spoke to my endo team to find that I needed at least 5 mg for the lack of adrenals and additional for the PMR. Since then it has been a yo-yo and I am now back on 14 mg. Yesterday I was despairing and spoke to my hospice with a home visit today. Bless them, they are trying hard to help (or perhaps I am just TRYING!) but I also have several other majorish things wrong with me which complicate the picture. My GP has asked for a re-referral to my rheumatologist but appointment isn't until end of January. The right shoulder is a nightmare with the left not being that far behind. My neck screams at me. Now the pain is down the right arm, in the wrist, lower back and from time to time in the ankles. I think I reached a high fatigue level as well yesterday. I don't like to feel sorry for myself but its my 80th next week and I would like to enjoy! I keep myself calm with cooking but recently I have spent so much time feeling poorly that I haven't felt up to it. Even the Christmas presents (preserves) have gone by the board! Milwaukee shoulder the consultant told me is degenerative and doesn't respond readily to any painkillers - tell me about it. The hospice doctor told me to dip in a bit to my bottle of morphine 'just to take the edge off'. Took a long time to have the slightest effect this afternoon and but for that I wouldn't be sitting here trying to type. So I sympathise and empathise with you; I wish you better; and wish I could help yours - and mine - go away. I'm going to have to cook tomorrow as I've already taken the chicken, smoked sausage and chorizo out of the freezer so I hope that by the time I have finished I feel relaxed and calmer and have 'cooked' the pain away. Who am I kidding?!!!!!!!

cycli profile image
cycli in reply to Brocade

sounds terrible brocade. Sorry to hear. i have a thought. Your pain sounds like extreme musculature contraction affecting nerve. i have similar and have found that pressure point massage on the longisimus at the point os pain can relieve the contraction and reduce or eliminate the pain. Today it was excruciating and made me cry out but have managed to find the right spot and now it's peaceful. Maybe worth a try and if you aren't flexible enough to reach the spot yourself then maybe a spaecialist can fix.

LMali profile image
LMali in reply to Brocade

I also enjoy cooking - good therapy, put the radio on, cook at a gentle pace, nice!! Trouble with codeine - lovely though it is - is that it makes you "stupid and constipated" to quote a dr friend of mine. He is right but sometimes it is just what you need!!

Golden20 profile image
Golden20

I’m so sorry you are feeling so bad. My heart goes out to you. The pain always feels so much worse during the night. I wonder if you’re reducing your pred too quickly. I’m in my 4th year with PMR and have been up and down many times. I felt I was letting myself down each time I had to increase my dosage, which only made my situation worse. Everyone experience is different with this disease. I hope you get to a stage where your pain is eased soon. I’m only just on 2mg now. Thinking of you. Good luck.

Missus835 profile image
Missus835

I feel the pain in your writing. You are having a rough time. I've just had to up my Pred to 15 mg after having flu for almost 2 weeks. I do take a lot of D3 (3000 mg) and K2 and think this has helped me greatly in not getting secondary infection. At 72, I feel QOL is extremely important and although I would love to reduce to 3 to 5 mg per day, I realize it will take time and the slower the better. I could not tolerate a full flare at this point (although it's always a possibility). I've tried to accept this disease, rather than fight it because it has a "mind" of its own. It's very exhausting paddling upstream, so I try not to do that. If you have to go up a few mg. to alleviate the pain, then so be it. Do whatever it is you can do and leave the rest for the next day. I listen more to those on this site, value their teaching and have gained great insite into PMR and how to deal on the daily. All the best to you in this very challenging journey, but we're all in it with you. You're not alone.

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