PMRGCAuk
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Hello I'm new here

Hello I'm new here

Hi to all! I was diagnosed with PMR last October 2016, after an extremely stressful year I developed muscular pain in my legs and shoulders. I was quickly given 15mg of steroids which worked wonders. A month later I noticed that I had a swelling to the left side of my neck and face and as it was thought a lump had appeared I had scans and tests which revealed that there was no lump and the symptoms could not be put down to taking the steroids as they were only on one side. Apparently steroids are systemic and could not just affect one side of my face. So was advised this was fatty deposit that I may have to learn to live with. I find it hard to believe this is unrelated. I have continued to reduce my steroids as quickly as possible, probably too quickly maybe. I still have muscle pain in my shoulders and hips and knees. I also have joint pain in my fingers and thumbs. My GP has now referred my to a Rheumatologist as he does'nt think that the pain in the knees and fingers is related to PMR.

As an added problem I have an under active thyroid and take thyroxine.

And in the last 6 months found my hair is falling out. I have also developed a buffalo hump and weight gain due to the steroids. Feeling very frustrated at the added insult to injury I am experiencing!

I am and always have been a very keen swimmer and swim at least 2 miles a week. This does have its affects, but I am determined that PMR will not take away my beloved activity. It does worry me that I may delay the healing process by pushing myself so hard, and wonder having read on this site, that maybe I should try cutting this back to half what I have always done.

I look forward to hearing from other sufferers with their opinion and ideas on treatment.

Does anyone else out there have swelling to one side of their face and neck?

Does anyone else have hair loss? (This maybe connected to my thyroid)

Does anyone have pain in their knees?

I take 6 mg of steroids currently 3 mg day and evening. What are your thoughts, should I take all at once in the morning or split it as I am doing? I am always worse in the mornings.

42 Replies
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Everyone is worse in the mornings - the inflammatory substances that cause the pain and stiffness are shed in the body at about 4.30am - and until you take the pred to combat it and it takes effect you will have pain. The recommended way to take pred is all in one go as early in the morning as possible, some people wake to take it early and settle down for another couple of hours. Or others take it before bed - and it is working by morning.

A lot of people complain of hair loss - but it does usually return, Mine did. But it may not be pred - it may be the PMR. Hair loss is a common response to illness but it tends to happen a few months later.

The fatness of pred is always fatty deposits - and can be reduced by cutting carbs drastically. Honestly - you can lose weight while on pred!

I would split my swimming into smaller sessions. Your muscles are intolerant of acute exercise - even if you were doing it the week before you got PMR. That may help the pain - too much leads to DOMS and that then takes a longer time than usual to resolve.

Ooops - must dash and get dinner!

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Thanks so much for your response, it really does feel great to chat with someone who knows how it feels! So glad I have joined this group 😁.

I realise I am probably over doing the swimming, and at my session last night cut down the distance and enjoyed the relaxing warm up & cool downs.

This morning I took all my pred at once and let's see how I go? I guess it may take a couple of days to settle down. I'm a little worried how I will feel tomorrow morning.

I had been going to weight watchers, but considering giving up because it seems a losing battle. Will have to look at those carbs then!

Thanks again and hope you are feeling well.

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Cutting carbs can be done free - WW costs and often they don't understand the complications of someone being on pred.

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yes I know you are right! will have to look at my carbs then. thank you

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I have managed to cut carbs right down. And believe me I was/am total carb head. always preferred the pasta/rice part of the dish. I honestly don't miss it at the moment. have had occasional potato....cant give up everything!! But new potatoes have a lower glycemic index so release glucose more slowly. Fruit is my main problem but diabetes nurse says not going to stop me eating a bit of fruit. So I just limited bread and no white bread at all.

I was pretty big to start with and did pile weight on at first. But have lost another 1kg this month. So lost 3kg on 13mg steroid. It can be done but I have found rest and being as kind to self as possible is key. had hectic week last week but recovering by doing very little this week.

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Thanks for taking the time to reply. I am going to look at my carbs! You sound like you have managed to do well with your weight loss despite the steroids so thats really positive to hear it can be done!

Yes reading on this site I recognise I need to listen to my body more and slow down a bit, rather than try and battle on thinking this illness will go away. Its not going anywhere fast!

All the best to you and well done with the weight loss!

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I bought a book called carbs and cals from diabetes UK. it just has photos of diff foods with portion sizes and tells you carb content. it just helped me visual it better and has every day foods including takeaways etc so you keep a sense of proportion and portion!

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That sounds great and easy too, thank you!

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Hi, just wanted to say that I am on 10mg Pred at the moment cutting down 1mg a month on advice of my rheumatologist. I have gained loads of weight since last October when I was diagnosed with PMR and put on the steroids. I joined Slimming World 3 weeks ago and have lost 51/2lbs since I started. I know we're all different but it shows it is possible. Hope this helps 😊

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Wow that is great to hear!! I have to admit the support of a group is what give me the will power to stick to it.

Many thanks for taking the time to reply to me, it is possible then and I must keep focused even if it is two steps forward and one back a lot of the time.

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Organizational question

I would like to contribute and get welcome literature etc. would that be by contacting a specific web address? Or snail mail address? Is there a main org. that you are all connected to? Can a Yank officially join? Hey all my cousins are from U.K. Or Oz

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No idea about the national PMRGCA - but the northeast lot love everybody as far as I know

pmr-gca-northeast.org.uk

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Agree with everything PMRPro has said - apart from the dinner!

There are others on here that also have a thyroid problem, so sure they'll be along shortly.

Hair loss/condition is just as much due stress and/or illness. So although it's distressing at the moment it will improve.

Keep swimming, but reduce the amount you do - you body/muscles take much longer to recover than pre PMR.

You are also getting to the stage where you own adrenal glands need to start working again, many find that a difficult time, so just be aware, and don't push yourself too much. Fatigue can be a problem around the dose you're on now.

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Thanks so much for your reply, it's great to feel the support!

Yes I think I realise I have been over doing the swimming. And it does seem strange that I am struggling with the muscle pain so much at this stage when I'm at 6 mg now. My dr also said we would need to chat as I drop down as my immune system would be low.

It's good to know that others suffer with the hair loss, it seems it's a slow process until it rights itself. I've had all the blood test and my B12 is all good.

I've been trying to fight this head on, and thinking that I need to slow down and look after myself.

Thank you so much for taking the time to reply to me, and I hope you are feeling well!

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Hi again,

Think your pains at moment could well be due to adrenal glands not sparking properly as much as the PMR itself - although if that's still active both scenarios make life very difficult.

The only thing really is to reduce Pred very slowly (thus giving your adrenal chance to wake up) and make sure you don't exert yourself too much. It can be very frustrating, especially if you're used to an active life, but it's the only way. As I said to someone else yesterday, your muscles are not as resilient as pre PMR, so need longer to recover from any activity.

Take care.

I'm good at the moment thanks.

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Pleased to hear you are good at the moment!

Yes I take on board your advice to slow things down a bit. I was of the thinking that if I pushed myself I would fight it off, and clearly this does not work.

I have been reducing my steroids slowly. Basically when I thought I was ready reduced from say 7 to 6 mg, going 7 one day 6 the next for a couple of weeks and then staying on the lower amount. I read that somewhere and its been working for me. Until now maybe. So sticking on 6mg and listening to my body more!! Thanks so much for you advice.

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"we would need to chat as I drop down as my immune system would be low."

It would be lower at a higher dose of pred - what's he thinking?

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Maybe I have misunderstood my Dr, it is all quite complicated. He said I must come in and chat to him when I get down to 5mg. I remember him saying we would have to be careful as my body would struggle to fight off infection at this stage?

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About that point the adrenal glands have to start producing cortisol, the body's natural corticosteroid, to top up the pred - above about 7 or 8mg there is enough steroid present so no more is produced and your adrenal glands go into hibernation. A slow reduction allows them a staged return to work - and often they need it!

You may become very fatigued and find it difficult to deal with stress as your adrenal glands may not respond the way they should. But I really haven't ever associated that with a predisposition to infection. I suppose he may be thinking in terms of "if you have an infection you may need more pred to help you fight it off because of the stress it imposes on your body" - but that isn't the same thing.

But hallelujah - a doctor who thinks about that! Unlike one who recently told a patient who had been on pred for 5 years to drop from 15mg to zero in the matter of a few weeks: "You haven't got PMR so it won't be a problem" they said. Though how there is any proof the patient hasn't got PMR I don't know and after 5 years those adrenal aren't going to spring to life in an elderly patient that easily!

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Thank you for this, it makes good sense. I definitely feel fatigued, fuzzy headed and not coping with stress in my life! It certainly helps to understand what is going on within my own body! I wish that I had more time with my GP but they never have the time. In this day and age though there is nothing to stop me researching more, maybe I should do this, think I have been in denial.

I think my GP has more sense than the one you describe although I am relieved he has at last referred me to a rheumatologist.

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Why now? Seems a bit late! But slow down the reduction - let your body catch up. One top rheumy in the PMR world likes to keep people at 5mg for months - it is a low dose with few adverse effects and low enough to stimulate adrenal function without leaving you at too much risk.

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My GP has referred me now because I have asked. Apart from the usual pain from PMR, I am also suffering with pain in my thumbs and one finger! But also my knees, which is really debilitating. I can't kneel, and once I'm down I can't get up for the pain. This does not sound like PMR to my GP or myself and I wonder what else may be going on. I've obviously had lots of blood tests which don't show anything particularly and low inflammatory. This started about 2 months ago. Before I was given the PMR diagnosis Oct last year I was a very fit 54 year old 😫😫. So answering your question I asked for the referral, had never been offered one before, guessed it something the GP just dealt with.

Yes I intend to reduce very slowly now, I am really struggling with the pain.

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I am 56 and Havent knelt for years. if I accidentally have to it sounds like I have knelt on rice krispies as does just bending knee lol. A bit of OA from small injuries in.past.

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hi ggmotm!

I too have hypothyroidism (3yrs) and PMR. dx 14mths. Currently on 13mg pred having experienced flare at 8mg..

my hair has shown signs of thinning before dx thyroid issues. then it regained its former texture after a year on med. either pred or PMR had has made it start thinning a bit again but hope that once things settle it'll get back to its usual texture. Not sure menopause helped over that time either.

're one side of face swelling. the right side of my face is more prevalent sometimes. I just put it down to fact that I may lay in that side in bed and tend to rest my head/face on my right hand watching tv or reading. Certainly makes right shoulder more tender.

My hands are often painful and would put that to PMR and OA. I saw rheumatologist for first time jan/Feb and he suspects something like Rheumatoid arthitis bubbling underneath despite no blood evidence.

Having had a flare, which pushed numbers higher than at diagnosis, because I reduced too quickly I would say don't just reduce for the he'll of it. If you are experiencing symptoms please take a breath and consider long term picture. I will probably take more pred in long term because instead of stopping at 10mg when I felt symptoms again I just followed doctors orders to reduce remorseless and ended back up at 15mg after 8 months. And as I say still.on 13mgsc14 months later. I wish I had stopped at 10mg for a few months not weeks. Hope you get lots of support from this group. I will be dashing for dinner now!! 🌻

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Many thanks for taking the time to reply to me the support certainly feels great!

It is interesting to chat with someone else who suffers with thyroid problems and also PMR. Many years ago I had a very over active thyroid and had radio iodine treatment, since then having to take thyroxine daily. I was on 150 mg for a long time, then since starting on the steroids went overactive again and have had to drop to 125 mg daily. It does seem strange that the steroids have unsettled things. I am hoping that the hair loss was because I had gone overactive again and dropping my dose will settle things down again.

I agree dropping the steroids should be a very slow process.

I hope you are keeping well and got to your dinner on time!

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I think the PMR can unsettle things itself. My thyroid was playing with me for years. I would have my diabetes eye blood test and thyroid underactice a bit but not quite. Then would have another blood test 2 weeks later having been called in about it and it would be in normal range again. Funnily it went hypo full time when i had just lost 50lbs on weight watchers and I couldn't understand why weight was coming back but I was still doing points. Am only on a fairly low dose of levothyroxine 50mg which is a pinch. My friend who also has hypothyroidism has been going from 125mg down to 75mg and all points between and she hasn't got PMR.

At least my eyebrows have come back fully now. people tried to tell me it's just because the grey had taken over the ends. lol. I knew it was thyroid.

First thing rheumatologist said was well you have one autoimmune disease and usually another isn't far behind. Given that my body is fighting itself i reckon I didn't ought to join in just yet lol.

Hope your reduction goes nice and smoothly. But don't tolerate more pain than you should. Don't want PMR showing it's teeth fully again.👹

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thank you and all the best to you! slowly and surely is the way!

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I too have hypothyroidism and a half moon face and a spare tyre round my middle no hump so far. My hair thinned when I was taking 60mg of pred for thyroid eye disease but hasn't changed much this time round.

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Thank you for your reply and it is good to hear that I am not the only one! These steroids although give miraculous relief, do have some cruel effects on our bodies.

I do hope things improve for you too!

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Please be very careful reducing pred I was doing well on 7.5/7mg alternate days for two months then had a flare now back to 15mg will be reducing more slowly this time and listening to my body more carefully. All good wishes.

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Thank you for sharing this. It's interesting to hear after 2 months this can happen. I am really struggling at the moment having dropped slowly from 7 > 6 mg and just hoping it will settle down. It's a miserable condition.

I do hope you manage to reduce slowly too without further problems.

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Most of the effects on our bodies can be managed when you know how - just ask about specific problems you have. Someone will have been there.

I regard steroids as my friend - they gave me my life back. Nothing would induce me to go back to PMR without them! It wasn't my choice but - never again!

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Pred is definitely my friend been rescued twice now, saved my sight with Thyroid eye disease and my sanity with PMR. Thought I was resting enough with the DF but with hindsight probably not will try to do better in future and slow down on the reducing pred as well. Rheumy is happy to leave that to me now with an occasional phone call to check all is well. I think he is quite happy to have one less cluttering up his clinic!

Many thanks for all the fantastic advice you share with us.

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Yes I realise that steroids do an amazing job and I couldn't get through the day without them. But I'm so keen to get off them because of the other effects they have had on my body. However I now realise I have to do this slowly. My mother always says I want to run before I can walk!! 😩

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Thanks that great to hear, I do have loads of questions to ask!

Yes the steroids are a saviour I know, just can't get past all the contraindications they have caused to my body. I do want to get off them, but realise it will have to be slow and steady.

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I only wanted to say that turmeric powder can and does help with inflammation. It is often used for people with all types of arthritis and any other types of inflammatory ailments. It can also be used at the same time as one using preds just not to be taken at the very same time as you administer it. So take it an hour or two before or after. :-)

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Not advertising I just know I saw someone say there were no other options so I was just handing this one out...

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We often suggest turmeric as part of an anti-inflammatory diet. However, care must be taken depending on what other drugs you are on. While dietary turmeric is probably OK, anyone on anticoagulant therapy with warfarin shouldn't take supplements and many people find they have gastric problems with the high dose capsules

There is no alternative to pred in PMR in terms of pharmaceutical approaches. There is a group of RA drugs (anti IL-6 biologics) which will probably work and may eventually be used but since they are biologics it isn't going to be financially viable in the UK.

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I tried the turmeric with the requisite black pepper and was doubled up with tummy pain. needless to say it's still in the cupboard.

I discussed it with my next door neighbour whose family are from Pakistan and she said it is always taken in warm milk for aches and pains by elderly to stop tummy issues. in the end I just decided to cook with it.

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Thank you again! And yes I take turmeric daily just in the powder form. It's not particularly pleasant but I'm committed and don't have to worry about other drugs.

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Thank you for sharing this. I totally agree with you about the turmeric. Initially diagnosed I looked for any other way than steroids. The steroids were give amazing relief like no other, but I have started using turmeric regularly, I take it in my porridge and also with kefir. I have to say they are both an acquired taste but one I've got used to now.

Many thanks

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I can only say that there are a lot of people for whom the pred gave them their life back - there are some here who were in wheelchairs and required ambulance transport to get to hospital appointments. If you are in that sort of situation - or heading for it, the downsides of pred become rather secondary. After 5 years of PMR with no treatment other than diet and lifestyle changes I found the prospects of the side effects were well offset by the pain relief.

And if you develop any signs and symptoms of GCA please don't think of trying to manage it with anything else because then you risk losing your sight.

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