Is some pain necessary when gradually reducing steroids ?

[Oigami]

Hi I have been on pred for 6 months now. Originally because of bad polymyalgia pain in lower limbs which eased off - but then 4 months ago when flare up was on both wrists. I went up to 40mg a day but in January started cutting down to 5mg. 3 weeks ago. Then at 5 mg pain came back in wrists ( not so severe ) so Dr advised to increase by 1mg. So I am currently on 6 mg a day. I still have pain but am working on the assumption I should put up with this so the body can start to replace the pren. The alternative is to increase the dose- but I want to come off steroids completely asap. Is it good to put up with manageable pain in the hope that this will ease off as the body reduces need for steroids ?

[SnazzyD]

Gosh, 40mg was a bit of a leap given that PMR top dose is more like 25mg. Was carpal tunnel syndrome ruled out at any point? What was the basis of your PMR diagnosis? If you have PMR you need the dose you need and no plan or desire will work if your autoimmune activity is still chucking out inflammation. At what dose were you last comfortable?

[Oigami in reply to SnazzyD]

Thankyou for your reply. The diagnosis was on the basis that with my first ever flare up of severe pain I was given 1 week supply of pren at 20mg which worked. Then I was out on a different anti-inflammatory drug which didn't work so I was put back on pren at 20mg which worked until I got a flare up this time in my wrists 2 months later after weightlifting. The dose was in teased to 40 mg until the pain went away. Diagnosis also related to blood test which showed extremely high inflammation results. I am being tested every 2 weeks for inflammation readings . Thankyou

[PMRpro Ambassador in reply to Oigami]

I do hope you have put the weights down for the moment? Being on pred isn't a miracle answer to the pain you develop from overdoing it when you have PMR. As I have just explained elsewhere, DOMS (delayed onset muscle soreness) is often experienced if you try to do too much exercise with PMR. Your muscles and soft tissues are compromised by the underlying autoimmune disease activity that is attacking them and creating inflammation. This means that DOMS develops in response to less use than usual and it also takes a lot longer for the microtears in muscle to heal. If you persist in exercising when you have pain you risk making the situation last far longer and even getting to a stage when it becomes permanent and the muscles don't heal.

[DorsetLady PMRGCAuk volunteer]

My first point would be you very rarely require 40mg for PMR .. especially for a flare . On the other side of the equation neither does an increase of 1mg in many cases. Doesn't sound as if GP has full understanding of the disease.

Most effective way is to increase by 5mg for 7-10 days [sometimes 14 days] - and then a return to a dose just above where the issue occurred.. so in you case up to 10mg for a period and then back to 6mg.

However many find that carpel tunnel syndrome [CTS] accompanies their PMR and seems to cause issues at lower doses.

Much as you would like to, you cannot just stop Pred once you have been in it any length of time, you are likely to cause an adrenal crisis - you need to nudge them back into working - and the easiest way to do that is to reduce slowly…

Plus no matter who much you want to come off Pred, there is little point if your PMR is still active… at at 6 months that very likely… your underlying disease will still continue to produce inflammation- and left untreated that can cause all sorts problems to your body.

few links that might help -

1. General info on your illness etc

healthunlocked.com/pmrgcauk...

2. Dealing with a flare

healthunlocked.com/pmrgcauk...

3. Adrenals

healthunlocked.com/pmrgcauk...

For our info, what dose did you actually start on?

[Oigami in reply to DorsetLady]

Thankyou for your advice which is very helpful. I have been referred to a specialist rheumatologist but don't know how long it will take to get an.appointment. I am also seeing a pharmacist and will raise your points with her . Thankyou

[Oigami in reply to DorsetLady]

When I had my first flare up which was extremely painful in buttocks to the extent that it was agony to sit down I was put on 20mg and this seemed to control it - but then it came back in my wrists and Dr kept incrrasingbupntob40mg. I was admitted to hospital in January with pneumonia and consultants immediately said I had to reduce by 5mg a week until I got down to only one 5mg tablet a day. and then see an endocrine specialist ( which hasn't happened) I think both the original flare up and the second one was because of over physical exertion

[PMRpro Ambassador in reply to Oigami]

It sounds as if you have met a selection of doctors who don't really know how it all works!! It is never a good idea to depend on pred alone to manage pain - the buttock pain was most likely to have been piriformis syndrome which is often involved in PMR and it responds well to stretches and exercises, reducing the need for pred. Having been on 40mg for a relatively short time is absolutely NO reason to be referred to an endocrinologist until you have tried tapering the dose slowly under GP supervision. If you have PMR as the underlying need for pred, at the lower doses you have 2 considerations to bear in mind where adrenal function is secondary to managing the PMR inflammation.

And it sounds as if you have identified a crucial point in PMR. It isn't just about getting the inflammation under control, it is about you adjusting your lifestyle and activities to accommodate the illness. How are your wrists now? Did the 40mg have any effect on the wrist pain? Did the GP say why they thought putting the dose up to 40mg was what was needed? Did they do any x-rays or anything?

[Oigami in reply to PMRpro]

Thankyou for your reply. The 40 mg did stop the pain in my wrists but the hospital consultant was surprised I hadn't been given tablets to avoid decrease in bone density so I am on those now. Consultant said to reduce quickly at 5mg a week. I have manageable pain in my wrists although it has affected playing tennis regularly. I also have COPD which worsened with high inflammation. I have not had any tests for carpal tunnel syndrome. I am hoping that my body will compensate for the manageable pain of being on 6mg so I can reduce further slowly

[PMRpro Ambassador in reply to Oigami]

I think it might be a VERY good idea to look at the effect playing tennis is having on the inflamed soft tissue structures in your forearms and wrists - being on pred isn't a licence to go back to your previous activities in an unrestricted manner. Part of managing PMR is lifestyle adjustments and pacing.

[DorsetLady PMRGCAuk volunteer in reply to Oigami]

Your last sentence speaks volumes 😂🤣 So self inflicted to a degree but also doctors who are struggling with how to treat…

Any possibility of paying to see a Rheumy privately? Not sure what pharmacist will offer -yes they know about drugs -but not always PMR.

[Oigami]

I originally had X ray on my wrists to check for any fracture etc but nothing showed up

[Koalajane]

I really think you need to read more about PMR and about pacing yourself.

You cannot rush PMR it goes when it is ready and not when you are.

It can last on average just under 6 years. Please read carefully the information sent by Dorset Lady

[Oigami in reply to Koalajane]

Thankyou for your reply. Ploymyalgia is still new to me . I think the steroids are giving me side effects I want to avoid e.g tiredness, swelling in face and leg and foot, loss of sense of taste etc which is why I would like to reduce/ stop taking them sooner rather than later if possible . I have just increased from 6mg to 7 as I have wrist pains on 6. I am seeing a pharmacist next week

[PMRpro Ambassador in reply to Oigami]

Tiredness is equally as likely to be the PMR, it is a component of all autoimmune disease. Swelling around you face is probably fat deposition - and one of the reasons we emphasise cutting carbs drastically when on pred. The moonface effect is hard to avoid but it can often be kept to being a fuller face rather than hamster cheeks. Most pred effects can be managed or even avoided if you are lucky.

You will be able to reduce and eventually stop only when the underlying cause of the symptoms, an autoimmune disorder has faded and burned out which it does eventually for 95% and more of patients, But how long that will take is unknown and if you go to too low a dose of pred before that, the inflammation will build up again and you will be back where you started and went to the doctor. Pred is to give you a better, less painful, quality of life in the meantime.

[Oigami in reply to PMRpro]

Thankyou for your reply. I've near enough given up alcohol over the past 4 months but not seen any drop in weight ! Based on everyone's helpful advice I've come to the conclusion that I am maybe in the long haul before I can give up prened completely. Thank you

[PMRpro Ambassador in reply to Oigami]

It is a lot more than just stopping alcohol! Processed carbs, added sugar, root veg in quantity, certain fruits, rice, pasta ... all significant contributors to carbs in diet.

[DorsetLady PMRGCAuk volunteer in reply to Oigami]

You are in for the haul -and PMR decides when you give up Pred-not you unfortunately. 😉

[agingfeminist]

It is very hard when you are first diagnosed with PMR to take on board that this is a serious disease that demands lifestyle changes. You have had excellent advice here...but it really does need a whole mind/personality shift. So many of us get this disease bang out of the blue having had very active lifestyles.

The pred knocks back the symptoms but not the underlying disease. Both the disease and the pred force us to rethink about physical exertion...

Gently, gently...slowly, slowly.

[Oigami in reply to agingfeminist]

Thankyou for your reply. Ploy myalgia came out of the blue last August . I am 76 andi understand age is a factor. I have had to stop regular tennis for the past 6 months and am finding it very difficult to adjust to a mind set that ploy myalgia might not go away for a while

[Blearyeyed]

Was it your GP that diagnosed PMR? Has it been confirmed by a Specialist?

I'd agree with Dorset Lady and PMRPro.

40 mg seems too high to treat a flare up in your wrists unless you were also being treated for something else.

If you were doing repetitive strenuous exercises at the time you were diagnosed with PMR , especially weightlifting, and continued to do that and play tennis while taking other anti-inflammatory medication it sounds like you could have had Piriformis Syndrome with Sciatica and 20 mg of steroids would have helped but it would still come back at lower doses if you continued to over exert those muscles and joints.

Steroids are not a cure for PMR or Piriformis Syndrome they only reduce and manage the inflammation until the condition has gone into remission and you have recovered.

You need to make changes to your daily activity and physical activities and pace yourself each day to help recovery , if you don't you aggravate the condition you have , cause a new increase in inflammation and pain and need to increase your steroids again to reduce the newly triggered symptoms.

Had you been doing a lot of heavy weightlifting and tennis before your diagnosis of PMR?

If you do have PMR the steroids only help manage the inflammation with lifestyle changes until the PMR goes into remission.

PMR hasn't gone when the pain is managed , it can take at least a year before it begins to go into remission and can take years before it has gone into remission enough to be able to stop needing steroids entirely.

Yes. the larger doses aren't taken for a long time and you require some supplements to help reduce bone density loss risks , but when you get below 15 mg you usually need to slow down your taper and allow the body to cope and eventually recover whilst using lifestyle changes on that slow steroid taper.

It is unlikely to be PMR if the pain only occurs after strenuous physical exercise, especially at the beginning before you begin steroids.

Every Flare you have requires a return to a higher steroid dose to treat the flare which eventually slows down how quickly or how well your body can recover from PMR.

The same is true with any condition or injury that causes inflammation, it doesn't get better if you keep doing the same things and causing the same Stress in your body that helped trigger it in the first place.

It doesn't matter how much you want to get back to normal, or off steroids with PMR , the PMR will dictate when it's time for it to stop bothering you , sheer will, exercise and even treatments won't change the length of time PMR is part of your health profile , they will over help manage the inflammation and stop the flares.

Have you been assessed for Rheumatoid or Osteoarthritis Arthritis , especially in the wrists , or have they considered Reactive or Inflammatory Arthritis which can cause the same symptoms when triggered by too much physical exertion and has similar increase in blood markers and responds to steroids?

There are various types of Arthritis, particularly Reactive Arthritis, which could cause the pain and recovery response to high dose steroids in the buttock and hip area , shoulders and wrists. You can have Inflammatory Arthritis and Osteoarthritis at the same time and certain types of exercise including weightlifting, tennis and golf trigger increased pain and symptoms with these conditions.

Inflammatory Arthritis also improves with steroids but will often be treated with other anti inflammatory drugs as well with steroids being used for acute flares.

As others have said , Carpal Tunnel Syndrome is also an obvious candidate for your wrist pain and it is also aggravated by the exercises you were doing and can be relieved in the short term by steroids.

I'd personally suggest that you should ask your GP to chase up your Rheumatology appointment.

Ask the GP to assess you themselves for Carpal Tunnel and send you to Orthopedics for a decision about treatment if you have it .

Ask the GP to assess you for Inflammatory Arthritis and Piriformis, you can also request to be sent to the Rheumatology Physiotherapist at your local hospital whom are also knowledgeable about assessing whether you have inflammatory conditions or repetitive injury problems occurring and can help with the right therapy.

Was there another reason for the hospital wanting you to see an Endocrinologist apart from because you were taking steroids and were being treated for PMR? Such as the cause for your Pneumonia or the COPD?

Most people on steroids treatments aren't sent to Endocrinology so quickly or early in their treatment , many do not see them at all , even at lower doses unless they have other issues with their thyroid, adrenals or other enzyme and hormone problems.

Which makes me wonder was this referral to do with something else like the cause of your Pneumonia.

And are the doctors suggesting a quicker taper off steroids because they think you may have something other than PMR which may not require them? It may be worth asking for an explanation from the GP.

I think it's definitely time for you to push for more tests and answers because unless your GP really knows nothing at all about assessing and diagnosing a patient for any rheumatoid, arthritic or muscular health issues or has begun to treat you for something else and reassessed their original diagnosis of PMR the way you are being treated seems to be very confused. Take care , Bee

[AtopicGuy]

You don't give your age. Lower leg and wrist pain are rarely a good indicator of PMR, unless accompanied by symptoms in the neck/shoulders/hips, which you do not mention. To what degree does the following NHS check list correspond with how you felt before diagnosis?

NHS Symptom checklist

After ruling out other possible causes of your symptoms, a checklist can be used to see if your symptoms match those most commonly associated with polymyalgia rheumatica.

Polymyalgia rheumatica can usually be confidently diagnosed if you meet all of the following criteria:

you're over 50 years of age

you have pain in your shoulders or hips

you have stiffness in the morning that lasts longer than 45 minutes

your symptoms have lasted for more than 2 weeks

blood tests show raised levels of inflammation in your body

your symptoms rapidly improve after treatment with steroids

[Oigami in reply to AtopicGuy]

Thankyou for your reply. I'm 76 . Unfortunately I tick almost all the items on the NHS checklist!

[AtopicGuy in reply to Oigami]

Those are the signature symptoms of PMR. Whatever is causing it can certainly extend to other areas.